Article

Learning health systems (LHS) promote a continuous process that can assist in making sense of uncertainty when confronting emerging complex conditions such as Long COVID. Long COVID is an infection-associated chronic condition that detrimentally impacts veterans, their families, and the communities in which they live. This complex condition is defined by ongoing, new, or returning symptoms following COVID-19 infection that negatively affect return to meaningful participation in social, recreational, and vocational activities.^1,2 The clinical uncertainty surrounding Long COVID is amplified by unclear etiology, prognosis, and expected course of symptoms.^3,4 Uncertainty surrounding best clinical practices, processes, and policies for Long COVID care has resulted in practice variation despite the emerging evidence base for Long COVID care.⁴ Failure to address gaps in clinical evidence and care implementation threatens to perpetuate fragmented and unnecessary care.

The context surrounding Long COVID created an urgency to rapidly address clinically relevant questions and make sense of any uncertainty. Thus, the Veterans Health Administration (VHA) funded a Long COVID Practice-Based Research Network (LC-PBRN) to build an infrastructure that supports Long COVID research nationally and promotes interdisciplinary collaboration. The LC-PBRN vision is to centralize Long COVID clinical, research, and operational activities. The research infrastructure of the LC-PBRN is designed with an LHS lens to facilitate feedback loops and integrate knowledge learned while making progress towards this vision.⁵ This article describes the phases of infrastructure development and network building, as well as associated lessons learned.

Designing the LC-PBRN Infrastructure

The LC-PBRN is a multisite operation with interdisciplinary representatives from 4 US Department of Veterans Affairs (VA) health care systems. Each site has ≥ 1 principal investigator (0.1-0.4 full-time equivalent [FTE]) and ≥ 1 project staff member (0.5-0.8 FTE). The lead site also employs data and statistical support staff (1.5 FTE). To build this infrastructure, VHA Health Services Research awarded $1 million in November 2023 to the 4 sites. The funding was distributed over 2 years. Additional funding will be required for sustainability. The components and key infrastructure elements of the LC-PBRN are outlined in the Table. The 2-year LC-PBRN implementation activities is outlined in the Appendix.

Vision

The LC-PBRN’s vision is to create an infrastructure that integrates an LHS framework by unifying the VA research approach to Long COVID to ensure veteran, clinician, operational, and researcher involvement (Figure 1). A critical aspect of this is a unifying definition of Long COVID, for which the LC-PBRN has adopted the National Academies of Science, Engineering, and Medicine (NASEM) definition: “Long COVID is an infection-associated chronic condition that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.”⁶ This is a working definition to be refined over time, as necessary, based on new data. The LC-PBRN aligns with existing VA initiatives by serving as a centralized hub for internal and external networking. This approach ensures shareholder needs are identified, resources are allocated appropriately, and redundancy in efforts is avoided. In this spirit, the LC-PBRN maintains a long-term vision of collaborating with other systems to support national efforts to address Long COVID.

Mission and Governance

The LC-PBRN operates with an executive leadership team and 5 cores. The executive leadership team is responsible for overall LC-PBRN operations, management, and direction setting of the LC-PBRN. The executive leadership team meets weekly to provide oversight of each core, which specializes in different aspects. The cores include: Administrative, Partner Engagement and Needs Assessment, Patient Identification and Analysis, Clinical Coordination and Implementation, and Dissemination (Figure 2).

The Administrative core focuses on interagency collaboration to identify and network with key operational and agency leaders to allow for ongoing exploration of funding strategies for Long COVID research. The Administrative core manages 3 teams: an advisory board, Long COVID council, and the strategic planning team. The advisory board meets biannually to oversee achievement of LC-PBRN goals, deliverables, and tactics for meeting these goals. The advisory board includes the LC-PBRN executive leadership team and 13 interagency members from various shareholders (eg, Centers for Disease Control and Prevention, National Institutes of Health, and specialty departments within the VA).

The Long COVID council convenes quarterly to provide scientific input on important overarching issues in Long COVID research, practice, and policy. The council consists of 22 scientific representatives in VA and non-VA contexts, university affiliates, and veteran representatives. The strategic planning team convenes annually to identify how the LC-PBRN and its partners can meet the needs of the broader Long COVID ecosystem and conduct a strengths, opportunities, weaknesses, and threats analysis to identify strategic objectives and expected outcomes. The strategic planning team includes the executive leadership team and key Long COVID shareholders within VHA and affiliated partners. The Partner Engagement and Needs Assessment core aims to solicit feedback from veterans, clinicians, researchers, and operational leadership. Input is gathered through a Veteran Engagement Panel and a modified Delphi consensus process. The panel was formed using a Community Engagement Studio model to engage veterans as consultants on research.⁷ Currently, 10 members represent a range of ages, genders, racial and ethnic backgrounds, and military experience. All veterans have a history of Long COVID and are paid as consultants. Video conference panel meetings occur quarterly for 1 to 2 hours; the meeting length is shorter than typical engagement studios to accommodate for fatigue-related symptoms that may limit attention and ability to participate in longer meetings. Before each panel, the Partner Engagement and Needs Assessment core helps identify key questions and creates a structured agenda. Each panel begins with a presentation of a research study followed by a group discussion led by a trained facilitator. The modified Delphi consensus process focuses on identifying research priority areas for Long COVID within the VA. Veterans living with Long COVID, as well as clinicians and researchers who work closely with patients who have Long COVID, complete a series of progressive surveys to provide input on research priorities.

The Partner Engagement and Needs Assessment core also actively provides outreach to important partners in research, clinical care, and operational leadership to facilitate introductory meetings to (1) ask partners to describe their 5 largest pain points, (2) find pain points within the scope of LC-PBRN resources, and (3) discuss the strengths and capacity of the PBRN. During introductory meetings, communications preferences and a cadence for subsequent meetings are established. Subsequent engagement meetings aim to provide updates and codevelop solutions to emerging issues. This core maintains a living document to track engagement efforts, points of contact for identified and emerging partners, and ensure all communication is timely.

The Patient Identification and Analysis core develops a database of veterans with confirmed or suspected Long COVID. The goal is for researchers to use the database to identify potential participants for clinical trials and monitor clinical care outcomes. When possible, this core works with existing VA data to facilitate research that aligns with the LC-PBRN mission. The core can also use natural language processing and machine learning to work with researchers conducting clinical trials to help identify patients who may meet eligibility criteria.

The Clinical Coordination and Implementation core gathers information on the best practices for identifying and recruiting veterans for Long COVID research as well as compiles strategies for standardized clinical assessments that can both facilitate ongoing research and the successful implementation of evidence-based care. The Clinical Coordination and Implementation core provides support to pilot and multisite trials in 3 ways. First, it develops toolkits such as best practice strategies for recruiting participants for research, template examples of recruitment materials, and a library of patient-reported outcome measures, standardized clinical note titles and templates in use for Long COVID in the national electronic health record. Second, it partners with the Patient Identification and Analysis core to facilitate access to and use of algorithms that identify Long COVID cases based on electronic health records for recruitment. Finally, it compiles a detailed list of potential collaborating sites. The steps to facilitate patient identification and recruitment inform feasibility assessments and improve efficiency of launching pilot studies and multisite trials. The library of outcome measures, standardized clinical notes, and templates can aid and expedite data collection.

The Dissemination core focuses on developing a website, creating a dissemination plan, and actively disseminating products of the LC-PBRN and its partners. This core’s foundational framework is based on the Agency for Healthcare Research and Quality Quick-Start Guide to Dissemination for PBRNs.^8,9 The core built an internal- and external-facing website to connect users with LC-PBRN products, potential outreach contacts, and promote timely updates on LC-PBRN activities. A manual of operating procedures will be drafted to include the development of training for practitioners involved in research projects to learn the processes involved in presenting clinical results for education and training initiatives, presentations, and manuscript preparation. A toolkit will also be developed to support dissemination activities designed to reach a variety of end-users, such as education materials, policy briefings, educational briefs, newsletters, and presentations at local, regional, and national levels.

Key Partners

Key partners exist specific to the LC-PBRN and within the broader VA ecosystem, including VA clinical operations, VA research, and intra-agency collaborations.

LC-PBRN Specific. In addition to the LC-PBRN council, advisory board, and Veteran Engagement Panel discussed earlier, the LC-PBRN has 8 VA Long COVID clinical sites that have joined the network. As part of the network, these sites gain greater insight into the Long COVID ecosystem within the VA through priority access to the Long COVID Veteran Engagement Panel and recognition as members of the network. The LC-PBRN also meets monthly with pilot projects conducted at other VA facilities to learn more about how Long COVID research is being implemented and identify how the LC-PBRN can assist in troubleshooting barriers.

VA Clinical Operations. To support clinical operations, a Long COVID Field Advisory Board was formed through the VA Office of Specialty Care as an operational effort to develop clinical best practice. The LC-PBRN consults with this group on veteran engagement strategies for input on clinical guides and dissemination of practice guide materials. The LC-PBRN also partners with an existing Long COVID Community of Practice and the Office of Primary Care. The Community of Practice provides a learning space for VA staff interested in advancing Long COVID care and assists with disseminating LC-PBRN to the broader Long COVID clinical community. A member of the Office of Primary Care sits on the PBRN advisory board to provide input on engaging primary care practitioners and ensure their unique needs are considered in LC-PBRN initiatives.

VA Research & Interagency Collaborations. The LC-PBRN engages monthly with an interagency workgroup led by the US Department of Health and Human Services Office of Long COVID Research and Practice. These engagements support identification of research gaps that the VA may help address, monitor emerging funding opportunities, and foster collaborations. LC-PBRN representatives also meet with staff at the National Institutes of Health Researching COVID to Enhance Recovery initiative to identify pathways for veteran recruitment.

LHS Feedback Loops

The LC-PBRN was designed with an LHS approach in mind.¹⁰ Throughout development of the LC-PBRN, consideration was given to (1) capture data on new efforts within the Long COVID ecosystem (performance to data), (2) examine performance gaps and identify approaches for best practice (data to knowledge), and (3) implement best practices, develop toolkits, disseminate findings, and measure impacts (knowledge to performance). With this approach, the LC-PBRN is constantly evolving based on new information coming from the internal and external Long COVID ecosystem. Each element was deliberatively considered in relation to how data can be transformed into knowledge, knowledge into performance, and performance into data.

First, an important mechanism for feedback involves establishing clear channels of communication. Regular check-ins with key partners occur through virtual meetings to provide updates, assess needs and challenges, and codevelop action plans. For example, during a check-in with the Long COVID Field Advisory Board, members expressed a desire to incorporate veteran feedback into VA clinical practice recommendations. We provided expertise on different engagement modalities (eg, focus groups vs individual interviews), and collaboration occurred to identify key interview questions for veterans. This process resulted in a published clinician-facing Long COVID Nervous System Clinical Guide (available at longcovid@hhs.gov) that integrated critical feedback from veterans related to neurological symptoms.

Second, weekly executive leadership meetings include dedicated time for reflection on partner feedback, the current state of Long COVID, and contextual changes that impact deliverable priorities and timelines. Outcomes from these discussions are communicated with VHA Health Services Research and, when appropriate, to key partners to ensure alignment. For example, the Patient Identification and Analysis core was originally tasked with identifying a definition of Long COVID. However, as the broader community moved away from a singular definition, efforts were redirected toward higher-priority issues within the VA Long COVID ecosystem, including veteran enrollment in clinical trials.

Third, the Veteran Engagement Panel captures feedback from those with lived experience to inform Long COVID research and clinical efforts. The panel meetings are strategically designed to ask veterans living with Long COVID specific questions related to a given research or clinical topic of interest. For example, panel sessions with the Field Advisory Board focused on concerns articulated by veterans related to the mental health and gastroenterological symptoms associated with Long COVID. Insights from these discussions will inform development of Long COVID mental health and gastroenterological clinical care guides, with several PBRN investigators serving as subject matter experts. This collaborative approach ensures that veteran perspectives are represented in developing Long COVID clinical care processes.

Fourth, research priorities identified through the Delphi consensus process will inform development of VA Request for Funding Proposals related to Long COVID. The initial survey was developed in collaboration with veterans, clinicians, and researchers across the Veteran Engagement Panel, the Field Advisory Board, and the National Research Action Plan on Long COVID.¹¹ The process was launched in October 2024 and concluded in June 2025. The team conducted 3 consensus rounds with veterans and VA clinicians and researchers. Top priority areas included the testing assessments for diagnosing Long COVID, studying subtypes of Long COVID and treatments for each, and finding biomarkers for Long COVID. A formal publication of the results and analysis is the focus of a future publication.

Fifth, ongoing engagement with the Field Advisory Board has supported adoption of a preliminary set of clinical outcome measures. If universally adopted, these instruments may contribute to the development of a standardized data collection process and serve as common data elements collected for epidemiologic, health services, or clinical trial research.

Lessons Learned and Practice Implications

Throughout the development of the LC-PBRN, several decisions were identified that have impacted infrastructure development and implementation.

Include veterans’ voices to ensure network efforts align with patient needs. Given the novelty of Long COVID, practitioners and researchers are learning as they go. It is important to listen to individuals who live with Long COVID. Throughout the development of the LC-PBRN, veteran perspective has proven how vital it is for them to be heard when it comes to their health care. Clinicians similarly highlighted the value of incorporating patient perspectives into the development of tools and treatment strategies. Develop an interdisciplinary leadership team to foster the diverse viewpoints needed to tackle multifaceted problems. It is important to consider as many clinical and research perspectives as possible because Long COVID is a complex condition with symptoms impacting major organ systems.^12-15 Therefore, the team spans across a multitude of specialties and locations.

Set clear expectations and goals with partners to uphold timely deliverables and stay within the PBRN’s capacity. When including a multitude of partners, teams should consider each of those partners’ experiences and opinions in decision-making conversations. Expectation setting is important to ensure all partners are on the same page and understand the capacity of the LC-PBRN. This allows the team to focus its efforts, avoid being overwhelmed with requests, and provide quality deliverables.

Build engaging relationships to bridge gaps between internal and external partners. A substantial number of resources focus on building relationships with partners so they can trust the LC-PBRN has their best interests in mind. These relationships are important to ensure the VA avoids duplicate efforts. This includes prioritizing connecting partners who are working on similar efforts to promote collaboration across facilities.

Clinical practice implications. The LC-PBRN is working towards clinical practice initiatives derived from this process in partnership with the Long COVID Community of Practice and the participating clinical sites. This may include efforts to increase the uptake of standardized instruments endorsed by clinical partners that facilitate assessment of outcomes. PBRN partners can then use outcomes data to ask and answer clinically relevant research questions and assess care quality to inform the learning process that is integral to an LHS. Future dissemination efforts will be centered around individual initiatives and deliverables from the LC-PBRN.

Conclusions

PBRNs provide an important mechanism to use LHS approaches to successfully convene research around complex issues. PBRNs can support integration across the LHS cycle, allowing for multiple feedback loops, and coordinate activities that work to achieve a larger vision. PBRNs offer centralized mechanisms to collaboratively understand and address complex problems, such as Long COVID, where the uncertainty regarding how to treat occurs in tandem with the urgency to treat. The LC-PBRN model described in this article has the potential to transcend Long COVID by building infrastructure necessary to proactively address current or future clinical conditions or populations with a LHS lens. The infrastructure can require cross-system and sector collaborations, expediency, inclusivity, and patient- and family-centeredness. Future efforts will focus on building out a larger network of VHA sites, facilitating recruitment at site and veteran levels into Long COVID trials through case identification, and systematically support the standardization of clinical data for clinical utility and evaluation of quality and/or outcomes across the VHA.

Learning health systems (LHS) promote a continuous process that can assist in making sense of uncertainty when confronting emerging complex conditions such as Long COVID. Long COVID is an infection-associated chronic condition that detrimentally impacts veterans, their families, and the communities in which they live. This complex condition is defined by ongoing, new, or returning symptoms following COVID-19 infection that negatively affect return to meaningful participation in social, recreational, and vocational activities.^1,2 The clinical uncertainty surrounding Long COVID is amplified by unclear etiology, prognosis, and expected course of symptoms.^3,4 Uncertainty surrounding best clinical practices, processes, and policies for Long COVID care has resulted in practice variation despite the emerging evidence base for Long COVID care.⁴ Failure to address gaps in clinical evidence and care implementation threatens to perpetuate fragmented and unnecessary care.

The context surrounding Long COVID created an urgency to rapidly address clinically relevant questions and make sense of any uncertainty. Thus, the Veterans Health Administration (VHA) funded a Long COVID Practice-Based Research Network (LC-PBRN) to build an infrastructure that supports Long COVID research nationally and promotes interdisciplinary collaboration. The LC-PBRN vision is to centralize Long COVID clinical, research, and operational activities. The research infrastructure of the LC-PBRN is designed with an LHS lens to facilitate feedback loops and integrate knowledge learned while making progress towards this vision.⁵ This article describes the phases of infrastructure development and network building, as well as associated lessons learned.

Designing the LC-PBRN Infrastructure

The LC-PBRN is a multisite operation with interdisciplinary representatives from 4 US Department of Veterans Affairs (VA) health care systems. Each site has ≥ 1 principal investigator (0.1-0.4 full-time equivalent [FTE]) and ≥ 1 project staff member (0.5-0.8 FTE). The lead site also employs data and statistical support staff (1.5 FTE). To build this infrastructure, VHA Health Services Research awarded $1 million in November 2023 to the 4 sites. The funding was distributed over 2 years. Additional funding will be required for sustainability. The components and key infrastructure elements of the LC-PBRN are outlined in the Table. The 2-year LC-PBRN implementation activities is outlined in the Appendix.

Vision

The LC-PBRN’s vision is to create an infrastructure that integrates an LHS framework by unifying the VA research approach to Long COVID to ensure veteran, clinician, operational, and researcher involvement (Figure 1). A critical aspect of this is a unifying definition of Long COVID, for which the LC-PBRN has adopted the National Academies of Science, Engineering, and Medicine (NASEM) definition: “Long COVID is an infection-associated chronic condition that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.”⁶ This is a working definition to be refined over time, as necessary, based on new data. The LC-PBRN aligns with existing VA initiatives by serving as a centralized hub for internal and external networking. This approach ensures shareholder needs are identified, resources are allocated appropriately, and redundancy in efforts is avoided. In this spirit, the LC-PBRN maintains a long-term vision of collaborating with other systems to support national efforts to address Long COVID.

Mission and Governance

The LC-PBRN operates with an executive leadership team and 5 cores. The executive leadership team is responsible for overall LC-PBRN operations, management, and direction setting of the LC-PBRN. The executive leadership team meets weekly to provide oversight of each core, which specializes in different aspects. The cores include: Administrative, Partner Engagement and Needs Assessment, Patient Identification and Analysis, Clinical Coordination and Implementation, and Dissemination (Figure 2).

The Administrative core focuses on interagency collaboration to identify and network with key operational and agency leaders to allow for ongoing exploration of funding strategies for Long COVID research. The Administrative core manages 3 teams: an advisory board, Long COVID council, and the strategic planning team. The advisory board meets biannually to oversee achievement of LC-PBRN goals, deliverables, and tactics for meeting these goals. The advisory board includes the LC-PBRN executive leadership team and 13 interagency members from various shareholders (eg, Centers for Disease Control and Prevention, National Institutes of Health, and specialty departments within the VA).

The Long COVID council convenes quarterly to provide scientific input on important overarching issues in Long COVID research, practice, and policy. The council consists of 22 scientific representatives in VA and non-VA contexts, university affiliates, and veteran representatives. The strategic planning team convenes annually to identify how the LC-PBRN and its partners can meet the needs of the broader Long COVID ecosystem and conduct a strengths, opportunities, weaknesses, and threats analysis to identify strategic objectives and expected outcomes. The strategic planning team includes the executive leadership team and key Long COVID shareholders within VHA and affiliated partners. The Partner Engagement and Needs Assessment core aims to solicit feedback from veterans, clinicians, researchers, and operational leadership. Input is gathered through a Veteran Engagement Panel and a modified Delphi consensus process. The panel was formed using a Community Engagement Studio model to engage veterans as consultants on research.⁷ Currently, 10 members represent a range of ages, genders, racial and ethnic backgrounds, and military experience. All veterans have a history of Long COVID and are paid as consultants. Video conference panel meetings occur quarterly for 1 to 2 hours; the meeting length is shorter than typical engagement studios to accommodate for fatigue-related symptoms that may limit attention and ability to participate in longer meetings. Before each panel, the Partner Engagement and Needs Assessment core helps identify key questions and creates a structured agenda. Each panel begins with a presentation of a research study followed by a group discussion led by a trained facilitator. The modified Delphi consensus process focuses on identifying research priority areas for Long COVID within the VA. Veterans living with Long COVID, as well as clinicians and researchers who work closely with patients who have Long COVID, complete a series of progressive surveys to provide input on research priorities.

The Partner Engagement and Needs Assessment core also actively provides outreach to important partners in research, clinical care, and operational leadership to facilitate introductory meetings to (1) ask partners to describe their 5 largest pain points, (2) find pain points within the scope of LC-PBRN resources, and (3) discuss the strengths and capacity of the PBRN. During introductory meetings, communications preferences and a cadence for subsequent meetings are established. Subsequent engagement meetings aim to provide updates and codevelop solutions to emerging issues. This core maintains a living document to track engagement efforts, points of contact for identified and emerging partners, and ensure all communication is timely.

The Patient Identification and Analysis core develops a database of veterans with confirmed or suspected Long COVID. The goal is for researchers to use the database to identify potential participants for clinical trials and monitor clinical care outcomes. When possible, this core works with existing VA data to facilitate research that aligns with the LC-PBRN mission. The core can also use natural language processing and machine learning to work with researchers conducting clinical trials to help identify patients who may meet eligibility criteria.

The Clinical Coordination and Implementation core gathers information on the best practices for identifying and recruiting veterans for Long COVID research as well as compiles strategies for standardized clinical assessments that can both facilitate ongoing research and the successful implementation of evidence-based care. The Clinical Coordination and Implementation core provides support to pilot and multisite trials in 3 ways. First, it develops toolkits such as best practice strategies for recruiting participants for research, template examples of recruitment materials, and a library of patient-reported outcome measures, standardized clinical note titles and templates in use for Long COVID in the national electronic health record. Second, it partners with the Patient Identification and Analysis core to facilitate access to and use of algorithms that identify Long COVID cases based on electronic health records for recruitment. Finally, it compiles a detailed list of potential collaborating sites. The steps to facilitate patient identification and recruitment inform feasibility assessments and improve efficiency of launching pilot studies and multisite trials. The library of outcome measures, standardized clinical notes, and templates can aid and expedite data collection.

The Dissemination core focuses on developing a website, creating a dissemination plan, and actively disseminating products of the LC-PBRN and its partners. This core’s foundational framework is based on the Agency for Healthcare Research and Quality Quick-Start Guide to Dissemination for PBRNs.^8,9 The core built an internal- and external-facing website to connect users with LC-PBRN products, potential outreach contacts, and promote timely updates on LC-PBRN activities. A manual of operating procedures will be drafted to include the development of training for practitioners involved in research projects to learn the processes involved in presenting clinical results for education and training initiatives, presentations, and manuscript preparation. A toolkit will also be developed to support dissemination activities designed to reach a variety of end-users, such as education materials, policy briefings, educational briefs, newsletters, and presentations at local, regional, and national levels.

Key Partners

Key partners exist specific to the LC-PBRN and within the broader VA ecosystem, including VA clinical operations, VA research, and intra-agency collaborations.

LC-PBRN Specific. In addition to the LC-PBRN council, advisory board, and Veteran Engagement Panel discussed earlier, the LC-PBRN has 8 VA Long COVID clinical sites that have joined the network. As part of the network, these sites gain greater insight into the Long COVID ecosystem within the VA through priority access to the Long COVID Veteran Engagement Panel and recognition as members of the network. The LC-PBRN also meets monthly with pilot projects conducted at other VA facilities to learn more about how Long COVID research is being implemented and identify how the LC-PBRN can assist in troubleshooting barriers.

VA Clinical Operations. To support clinical operations, a Long COVID Field Advisory Board was formed through the VA Office of Specialty Care as an operational effort to develop clinical best practice. The LC-PBRN consults with this group on veteran engagement strategies for input on clinical guides and dissemination of practice guide materials. The LC-PBRN also partners with an existing Long COVID Community of Practice and the Office of Primary Care. The Community of Practice provides a learning space for VA staff interested in advancing Long COVID care and assists with disseminating LC-PBRN to the broader Long COVID clinical community. A member of the Office of Primary Care sits on the PBRN advisory board to provide input on engaging primary care practitioners and ensure their unique needs are considered in LC-PBRN initiatives.

VA Research & Interagency Collaborations. The LC-PBRN engages monthly with an interagency workgroup led by the US Department of Health and Human Services Office of Long COVID Research and Practice. These engagements support identification of research gaps that the VA may help address, monitor emerging funding opportunities, and foster collaborations. LC-PBRN representatives also meet with staff at the National Institutes of Health Researching COVID to Enhance Recovery initiative to identify pathways for veteran recruitment.

LHS Feedback Loops

The LC-PBRN was designed with an LHS approach in mind.¹⁰ Throughout development of the LC-PBRN, consideration was given to (1) capture data on new efforts within the Long COVID ecosystem (performance to data), (2) examine performance gaps and identify approaches for best practice (data to knowledge), and (3) implement best practices, develop toolkits, disseminate findings, and measure impacts (knowledge to performance). With this approach, the LC-PBRN is constantly evolving based on new information coming from the internal and external Long COVID ecosystem. Each element was deliberatively considered in relation to how data can be transformed into knowledge, knowledge into performance, and performance into data.

First, an important mechanism for feedback involves establishing clear channels of communication. Regular check-ins with key partners occur through virtual meetings to provide updates, assess needs and challenges, and codevelop action plans. For example, during a check-in with the Long COVID Field Advisory Board, members expressed a desire to incorporate veteran feedback into VA clinical practice recommendations. We provided expertise on different engagement modalities (eg, focus groups vs individual interviews), and collaboration occurred to identify key interview questions for veterans. This process resulted in a published clinician-facing Long COVID Nervous System Clinical Guide (available at longcovid@hhs.gov) that integrated critical feedback from veterans related to neurological symptoms.

Second, weekly executive leadership meetings include dedicated time for reflection on partner feedback, the current state of Long COVID, and contextual changes that impact deliverable priorities and timelines. Outcomes from these discussions are communicated with VHA Health Services Research and, when appropriate, to key partners to ensure alignment. For example, the Patient Identification and Analysis core was originally tasked with identifying a definition of Long COVID. However, as the broader community moved away from a singular definition, efforts were redirected toward higher-priority issues within the VA Long COVID ecosystem, including veteran enrollment in clinical trials.

Third, the Veteran Engagement Panel captures feedback from those with lived experience to inform Long COVID research and clinical efforts. The panel meetings are strategically designed to ask veterans living with Long COVID specific questions related to a given research or clinical topic of interest. For example, panel sessions with the Field Advisory Board focused on concerns articulated by veterans related to the mental health and gastroenterological symptoms associated with Long COVID. Insights from these discussions will inform development of Long COVID mental health and gastroenterological clinical care guides, with several PBRN investigators serving as subject matter experts. This collaborative approach ensures that veteran perspectives are represented in developing Long COVID clinical care processes.

Fourth, research priorities identified through the Delphi consensus process will inform development of VA Request for Funding Proposals related to Long COVID. The initial survey was developed in collaboration with veterans, clinicians, and researchers across the Veteran Engagement Panel, the Field Advisory Board, and the National Research Action Plan on Long COVID.¹¹ The process was launched in October 2024 and concluded in June 2025. The team conducted 3 consensus rounds with veterans and VA clinicians and researchers. Top priority areas included the testing assessments for diagnosing Long COVID, studying subtypes of Long COVID and treatments for each, and finding biomarkers for Long COVID. A formal publication of the results and analysis is the focus of a future publication.

Fifth, ongoing engagement with the Field Advisory Board has supported adoption of a preliminary set of clinical outcome measures. If universally adopted, these instruments may contribute to the development of a standardized data collection process and serve as common data elements collected for epidemiologic, health services, or clinical trial research.

Lessons Learned and Practice Implications

Throughout the development of the LC-PBRN, several decisions were identified that have impacted infrastructure development and implementation.

Include veterans’ voices to ensure network efforts align with patient needs. Given the novelty of Long COVID, practitioners and researchers are learning as they go. It is important to listen to individuals who live with Long COVID. Throughout the development of the LC-PBRN, veteran perspective has proven how vital it is for them to be heard when it comes to their health care. Clinicians similarly highlighted the value of incorporating patient perspectives into the development of tools and treatment strategies. Develop an interdisciplinary leadership team to foster the diverse viewpoints needed to tackle multifaceted problems. It is important to consider as many clinical and research perspectives as possible because Long COVID is a complex condition with symptoms impacting major organ systems.^12-15 Therefore, the team spans across a multitude of specialties and locations.

Set clear expectations and goals with partners to uphold timely deliverables and stay within the PBRN’s capacity. When including a multitude of partners, teams should consider each of those partners’ experiences and opinions in decision-making conversations. Expectation setting is important to ensure all partners are on the same page and understand the capacity of the LC-PBRN. This allows the team to focus its efforts, avoid being overwhelmed with requests, and provide quality deliverables.

Build engaging relationships to bridge gaps between internal and external partners. A substantial number of resources focus on building relationships with partners so they can trust the LC-PBRN has their best interests in mind. These relationships are important to ensure the VA avoids duplicate efforts. This includes prioritizing connecting partners who are working on similar efforts to promote collaboration across facilities.

Clinical practice implications. The LC-PBRN is working towards clinical practice initiatives derived from this process in partnership with the Long COVID Community of Practice and the participating clinical sites. This may include efforts to increase the uptake of standardized instruments endorsed by clinical partners that facilitate assessment of outcomes. PBRN partners can then use outcomes data to ask and answer clinically relevant research questions and assess care quality to inform the learning process that is integral to an LHS. Future dissemination efforts will be centered around individual initiatives and deliverables from the LC-PBRN.

Conclusions

PBRNs provide an important mechanism to use LHS approaches to successfully convene research around complex issues. PBRNs can support integration across the LHS cycle, allowing for multiple feedback loops, and coordinate activities that work to achieve a larger vision. PBRNs offer centralized mechanisms to collaboratively understand and address complex problems, such as Long COVID, where the uncertainty regarding how to treat occurs in tandem with the urgency to treat. The LC-PBRN model described in this article has the potential to transcend Long COVID by building infrastructure necessary to proactively address current or future clinical conditions or populations with a LHS lens. The infrastructure can require cross-system and sector collaborations, expediency, inclusivity, and patient- and family-centeredness. Future efforts will focus on building out a larger network of VHA sites, facilitating recruitment at site and veteran levels into Long COVID trials through case identification, and systematically support the standardization of clinical data for clinical utility and evaluation of quality and/or outcomes across the VHA.

Learning health systems (LHS) promote a continuous process that can assist in making sense of uncertainty when confronting emerging complex conditions such as Long COVID. Long COVID is an infection-associated chronic condition that detrimentally impacts veterans, their families, and the communities in which they live. This complex condition is defined by ongoing, new, or returning symptoms following COVID-19 infection that negatively affect return to meaningful participation in social, recreational, and vocational activities.^1,2 The clinical uncertainty surrounding Long COVID is amplified by unclear etiology, prognosis, and expected course of symptoms.^3,4 Uncertainty surrounding best clinical practices, processes, and policies for Long COVID care has resulted in practice variation despite the emerging evidence base for Long COVID care.⁴ Failure to address gaps in clinical evidence and care implementation threatens to perpetuate fragmented and unnecessary care.

The context surrounding Long COVID created an urgency to rapidly address clinically relevant questions and make sense of any uncertainty. Thus, the Veterans Health Administration (VHA) funded a Long COVID Practice-Based Research Network (LC-PBRN) to build an infrastructure that supports Long COVID research nationally and promotes interdisciplinary collaboration. The LC-PBRN vision is to centralize Long COVID clinical, research, and operational activities. The research infrastructure of the LC-PBRN is designed with an LHS lens to facilitate feedback loops and integrate knowledge learned while making progress towards this vision.⁵ This article describes the phases of infrastructure development and network building, as well as associated lessons learned.

Designing the LC-PBRN Infrastructure

The LC-PBRN is a multisite operation with interdisciplinary representatives from 4 US Department of Veterans Affairs (VA) health care systems. Each site has ≥ 1 principal investigator (0.1-0.4 full-time equivalent [FTE]) and ≥ 1 project staff member (0.5-0.8 FTE). The lead site also employs data and statistical support staff (1.5 FTE). To build this infrastructure, VHA Health Services Research awarded $1 million in November 2023 to the 4 sites. The funding was distributed over 2 years. Additional funding will be required for sustainability. The components and key infrastructure elements of the LC-PBRN are outlined in the Table. The 2-year LC-PBRN implementation activities is outlined in the Appendix.

Vision

The LC-PBRN’s vision is to create an infrastructure that integrates an LHS framework by unifying the VA research approach to Long COVID to ensure veteran, clinician, operational, and researcher involvement (Figure 1). A critical aspect of this is a unifying definition of Long COVID, for which the LC-PBRN has adopted the National Academies of Science, Engineering, and Medicine (NASEM) definition: “Long COVID is an infection-associated chronic condition that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.”⁶ This is a working definition to be refined over time, as necessary, based on new data. The LC-PBRN aligns with existing VA initiatives by serving as a centralized hub for internal and external networking. This approach ensures shareholder needs are identified, resources are allocated appropriately, and redundancy in efforts is avoided. In this spirit, the LC-PBRN maintains a long-term vision of collaborating with other systems to support national efforts to address Long COVID.

Mission and Governance

The LC-PBRN operates with an executive leadership team and 5 cores. The executive leadership team is responsible for overall LC-PBRN operations, management, and direction setting of the LC-PBRN. The executive leadership team meets weekly to provide oversight of each core, which specializes in different aspects. The cores include: Administrative, Partner Engagement and Needs Assessment, Patient Identification and Analysis, Clinical Coordination and Implementation, and Dissemination (Figure 2).

The Administrative core focuses on interagency collaboration to identify and network with key operational and agency leaders to allow for ongoing exploration of funding strategies for Long COVID research. The Administrative core manages 3 teams: an advisory board, Long COVID council, and the strategic planning team. The advisory board meets biannually to oversee achievement of LC-PBRN goals, deliverables, and tactics for meeting these goals. The advisory board includes the LC-PBRN executive leadership team and 13 interagency members from various shareholders (eg, Centers for Disease Control and Prevention, National Institutes of Health, and specialty departments within the VA).

The Long COVID council convenes quarterly to provide scientific input on important overarching issues in Long COVID research, practice, and policy. The council consists of 22 scientific representatives in VA and non-VA contexts, university affiliates, and veteran representatives. The strategic planning team convenes annually to identify how the LC-PBRN and its partners can meet the needs of the broader Long COVID ecosystem and conduct a strengths, opportunities, weaknesses, and threats analysis to identify strategic objectives and expected outcomes. The strategic planning team includes the executive leadership team and key Long COVID shareholders within VHA and affiliated partners. The Partner Engagement and Needs Assessment core aims to solicit feedback from veterans, clinicians, researchers, and operational leadership. Input is gathered through a Veteran Engagement Panel and a modified Delphi consensus process. The panel was formed using a Community Engagement Studio model to engage veterans as consultants on research.⁷ Currently, 10 members represent a range of ages, genders, racial and ethnic backgrounds, and military experience. All veterans have a history of Long COVID and are paid as consultants. Video conference panel meetings occur quarterly for 1 to 2 hours; the meeting length is shorter than typical engagement studios to accommodate for fatigue-related symptoms that may limit attention and ability to participate in longer meetings. Before each panel, the Partner Engagement and Needs Assessment core helps identify key questions and creates a structured agenda. Each panel begins with a presentation of a research study followed by a group discussion led by a trained facilitator. The modified Delphi consensus process focuses on identifying research priority areas for Long COVID within the VA. Veterans living with Long COVID, as well as clinicians and researchers who work closely with patients who have Long COVID, complete a series of progressive surveys to provide input on research priorities.

The Partner Engagement and Needs Assessment core also actively provides outreach to important partners in research, clinical care, and operational leadership to facilitate introductory meetings to (1) ask partners to describe their 5 largest pain points, (2) find pain points within the scope of LC-PBRN resources, and (3) discuss the strengths and capacity of the PBRN. During introductory meetings, communications preferences and a cadence for subsequent meetings are established. Subsequent engagement meetings aim to provide updates and codevelop solutions to emerging issues. This core maintains a living document to track engagement efforts, points of contact for identified and emerging partners, and ensure all communication is timely.

The Patient Identification and Analysis core develops a database of veterans with confirmed or suspected Long COVID. The goal is for researchers to use the database to identify potential participants for clinical trials and monitor clinical care outcomes. When possible, this core works with existing VA data to facilitate research that aligns with the LC-PBRN mission. The core can also use natural language processing and machine learning to work with researchers conducting clinical trials to help identify patients who may meet eligibility criteria.

The Clinical Coordination and Implementation core gathers information on the best practices for identifying and recruiting veterans for Long COVID research as well as compiles strategies for standardized clinical assessments that can both facilitate ongoing research and the successful implementation of evidence-based care. The Clinical Coordination and Implementation core provides support to pilot and multisite trials in 3 ways. First, it develops toolkits such as best practice strategies for recruiting participants for research, template examples of recruitment materials, and a library of patient-reported outcome measures, standardized clinical note titles and templates in use for Long COVID in the national electronic health record. Second, it partners with the Patient Identification and Analysis core to facilitate access to and use of algorithms that identify Long COVID cases based on electronic health records for recruitment. Finally, it compiles a detailed list of potential collaborating sites. The steps to facilitate patient identification and recruitment inform feasibility assessments and improve efficiency of launching pilot studies and multisite trials. The library of outcome measures, standardized clinical notes, and templates can aid and expedite data collection.

The Dissemination core focuses on developing a website, creating a dissemination plan, and actively disseminating products of the LC-PBRN and its partners. This core’s foundational framework is based on the Agency for Healthcare Research and Quality Quick-Start Guide to Dissemination for PBRNs.^8,9 The core built an internal- and external-facing website to connect users with LC-PBRN products, potential outreach contacts, and promote timely updates on LC-PBRN activities. A manual of operating procedures will be drafted to include the development of training for practitioners involved in research projects to learn the processes involved in presenting clinical results for education and training initiatives, presentations, and manuscript preparation. A toolkit will also be developed to support dissemination activities designed to reach a variety of end-users, such as education materials, policy briefings, educational briefs, newsletters, and presentations at local, regional, and national levels.

Key Partners

Key partners exist specific to the LC-PBRN and within the broader VA ecosystem, including VA clinical operations, VA research, and intra-agency collaborations.

LC-PBRN Specific. In addition to the LC-PBRN council, advisory board, and Veteran Engagement Panel discussed earlier, the LC-PBRN has 8 VA Long COVID clinical sites that have joined the network. As part of the network, these sites gain greater insight into the Long COVID ecosystem within the VA through priority access to the Long COVID Veteran Engagement Panel and recognition as members of the network. The LC-PBRN also meets monthly with pilot projects conducted at other VA facilities to learn more about how Long COVID research is being implemented and identify how the LC-PBRN can assist in troubleshooting barriers.

VA Clinical Operations. To support clinical operations, a Long COVID Field Advisory Board was formed through the VA Office of Specialty Care as an operational effort to develop clinical best practice. The LC-PBRN consults with this group on veteran engagement strategies for input on clinical guides and dissemination of practice guide materials. The LC-PBRN also partners with an existing Long COVID Community of Practice and the Office of Primary Care. The Community of Practice provides a learning space for VA staff interested in advancing Long COVID care and assists with disseminating LC-PBRN to the broader Long COVID clinical community. A member of the Office of Primary Care sits on the PBRN advisory board to provide input on engaging primary care practitioners and ensure their unique needs are considered in LC-PBRN initiatives.

VA Research & Interagency Collaborations. The LC-PBRN engages monthly with an interagency workgroup led by the US Department of Health and Human Services Office of Long COVID Research and Practice. These engagements support identification of research gaps that the VA may help address, monitor emerging funding opportunities, and foster collaborations. LC-PBRN representatives also meet with staff at the National Institutes of Health Researching COVID to Enhance Recovery initiative to identify pathways for veteran recruitment.

LHS Feedback Loops

The LC-PBRN was designed with an LHS approach in mind.¹⁰ Throughout development of the LC-PBRN, consideration was given to (1) capture data on new efforts within the Long COVID ecosystem (performance to data), (2) examine performance gaps and identify approaches for best practice (data to knowledge), and (3) implement best practices, develop toolkits, disseminate findings, and measure impacts (knowledge to performance). With this approach, the LC-PBRN is constantly evolving based on new information coming from the internal and external Long COVID ecosystem. Each element was deliberatively considered in relation to how data can be transformed into knowledge, knowledge into performance, and performance into data.

First, an important mechanism for feedback involves establishing clear channels of communication. Regular check-ins with key partners occur through virtual meetings to provide updates, assess needs and challenges, and codevelop action plans. For example, during a check-in with the Long COVID Field Advisory Board, members expressed a desire to incorporate veteran feedback into VA clinical practice recommendations. We provided expertise on different engagement modalities (eg, focus groups vs individual interviews), and collaboration occurred to identify key interview questions for veterans. This process resulted in a published clinician-facing Long COVID Nervous System Clinical Guide (available at longcovid@hhs.gov) that integrated critical feedback from veterans related to neurological symptoms.

Second, weekly executive leadership meetings include dedicated time for reflection on partner feedback, the current state of Long COVID, and contextual changes that impact deliverable priorities and timelines. Outcomes from these discussions are communicated with VHA Health Services Research and, when appropriate, to key partners to ensure alignment. For example, the Patient Identification and Analysis core was originally tasked with identifying a definition of Long COVID. However, as the broader community moved away from a singular definition, efforts were redirected toward higher-priority issues within the VA Long COVID ecosystem, including veteran enrollment in clinical trials.

Third, the Veteran Engagement Panel captures feedback from those with lived experience to inform Long COVID research and clinical efforts. The panel meetings are strategically designed to ask veterans living with Long COVID specific questions related to a given research or clinical topic of interest. For example, panel sessions with the Field Advisory Board focused on concerns articulated by veterans related to the mental health and gastroenterological symptoms associated with Long COVID. Insights from these discussions will inform development of Long COVID mental health and gastroenterological clinical care guides, with several PBRN investigators serving as subject matter experts. This collaborative approach ensures that veteran perspectives are represented in developing Long COVID clinical care processes.

Fourth, research priorities identified through the Delphi consensus process will inform development of VA Request for Funding Proposals related to Long COVID. The initial survey was developed in collaboration with veterans, clinicians, and researchers across the Veteran Engagement Panel, the Field Advisory Board, and the National Research Action Plan on Long COVID.¹¹ The process was launched in October 2024 and concluded in June 2025. The team conducted 3 consensus rounds with veterans and VA clinicians and researchers. Top priority areas included the testing assessments for diagnosing Long COVID, studying subtypes of Long COVID and treatments for each, and finding biomarkers for Long COVID. A formal publication of the results and analysis is the focus of a future publication.

Fifth, ongoing engagement with the Field Advisory Board has supported adoption of a preliminary set of clinical outcome measures. If universally adopted, these instruments may contribute to the development of a standardized data collection process and serve as common data elements collected for epidemiologic, health services, or clinical trial research.

Lessons Learned and Practice Implications

Throughout the development of the LC-PBRN, several decisions were identified that have impacted infrastructure development and implementation.

Include veterans’ voices to ensure network efforts align with patient needs. Given the novelty of Long COVID, practitioners and researchers are learning as they go. It is important to listen to individuals who live with Long COVID. Throughout the development of the LC-PBRN, veteran perspective has proven how vital it is for them to be heard when it comes to their health care. Clinicians similarly highlighted the value of incorporating patient perspectives into the development of tools and treatment strategies. Develop an interdisciplinary leadership team to foster the diverse viewpoints needed to tackle multifaceted problems. It is important to consider as many clinical and research perspectives as possible because Long COVID is a complex condition with symptoms impacting major organ systems.^12-15 Therefore, the team spans across a multitude of specialties and locations.

Set clear expectations and goals with partners to uphold timely deliverables and stay within the PBRN’s capacity. When including a multitude of partners, teams should consider each of those partners’ experiences and opinions in decision-making conversations. Expectation setting is important to ensure all partners are on the same page and understand the capacity of the LC-PBRN. This allows the team to focus its efforts, avoid being overwhelmed with requests, and provide quality deliverables.

Build engaging relationships to bridge gaps between internal and external partners. A substantial number of resources focus on building relationships with partners so they can trust the LC-PBRN has their best interests in mind. These relationships are important to ensure the VA avoids duplicate efforts. This includes prioritizing connecting partners who are working on similar efforts to promote collaboration across facilities.

Clinical practice implications. The LC-PBRN is working towards clinical practice initiatives derived from this process in partnership with the Long COVID Community of Practice and the participating clinical sites. This may include efforts to increase the uptake of standardized instruments endorsed by clinical partners that facilitate assessment of outcomes. PBRN partners can then use outcomes data to ask and answer clinically relevant research questions and assess care quality to inform the learning process that is integral to an LHS. Future dissemination efforts will be centered around individual initiatives and deliverables from the LC-PBRN.

Conclusions

PBRNs provide an important mechanism to use LHS approaches to successfully convene research around complex issues. PBRNs can support integration across the LHS cycle, allowing for multiple feedback loops, and coordinate activities that work to achieve a larger vision. PBRNs offer centralized mechanisms to collaboratively understand and address complex problems, such as Long COVID, where the uncertainty regarding how to treat occurs in tandem with the urgency to treat. The LC-PBRN model described in this article has the potential to transcend Long COVID by building infrastructure necessary to proactively address current or future clinical conditions or populations with a LHS lens. The infrastructure can require cross-system and sector collaborations, expediency, inclusivity, and patient- and family-centeredness. Future efforts will focus on building out a larger network of VHA sites, facilitating recruitment at site and veteran levels into Long COVID trials through case identification, and systematically support the standardization of clinical data for clinical utility and evaluation of quality and/or outcomes across the VHA.

THE DIAGNOSIS: Nail Lichen Planus

The biopsy results showed features of hypergranulosis of the matricial epithelium, irregular acanthosis, apoptotic keratinocytes along the basal layer, and a lichenoid infiltrate consistent with nail lichen planus. The patient was started on topical clobetasol propionate 0.05% applied once daily under overnight occlusion. Additionally, intramatricial triamcinolone acetonide (2.5 mg/mL; 0.1 mL per injection) was administered into the affected nail matrix at 4-week intervals for a total of 2 sessions. At the 2-month follow-up visit, the patient reported improvement in longitudinal ridging; however, he subsequently was lost to follow-up.

Nail lichen planus is a chronic inflammatory disorder that occurs in 10% to 15% of patients with lichen planus worldwide and is more common in adults than children.¹ It can manifest independently or concurrently with cutaneous and/or oral mucosal involvement. The fingernails are more commonly affected than the toenails.² The clinical features of nail lichen planus can be classified based on involvement of the nail matrix (longitudinal ridging, red lunula, thinning of the nail plate, koilonychia, trachyonychia, pterygium, and anonychia) or nail bed (onycholysis, subungual hyperkeratosis, and splinter hemorrhages).¹

In our patient, who presented with chronic progressive nail dystrophy affecting all 20 nails, onychomycosis, nail psoriasis, onychotillomania, and idiopathic trachyonychia were included in the differential.¹

Onychomycosis manifests as white or yellow-brown discoloration of the nail, onycholysis, subungual hyperkeratosis, and thickening of the nail plate. Diagnosis is confirmed by the presence of septate hyphae (dermatophytes) or budding yeast cells (Candida species) on a potassium hydroxide mount. Other diagnostic modalities include dermoscopy, fungal culture, and histopathology of nail clippings, with demonstration of fungal elements identified on periodic acid-Schiff staining (eFigure 1).³

Nail psoriasis characteristically manifests as deep irregular pitting of the nails. Other features favoring psoriasis include involvement of the nail matrix manifesting as leukonychia, red lunula, and crumbling, as well as involvement of the nail bed manifesting as onycholysis, subungual hyperkeratosis, salmon patches/oil spots, and splinter hemorrhages (eFigure 2).⁴ Diagnosis primarily is clinical, supported by histopathology when uncertainty exists.

Onychotillomania is a behavioral disorder characterized by an irresistible urge or impulse in patients to either pick or pull at their fingernails and/or toenails. Clinicopathologic features of the involved nails are nonspecific and atypical, with possible involvement of periungual and digital skin. Diagnosis of onychotillomania is challenging.⁵ Dermoscopic features including anonychia with multiple obliquely arranged nail bed hemorrhages, gray pigmentation of the nail bed, and wavy lines, has been proposed to aid the diagnosis of onychotillomania.⁶

Idiopathic trachyonychia is isolated nail involvement characterized by rough, ridged, and thin nails affecting multiple or all of the fingernails and toenails without an underlying systemic or dermatologic condition (eFigure 3). The terms trachyonychia and 20-nail dystrophy have been used interchangeably in the literature; however, trachyonychia does not always involve all 20 nails. Other conditions causing widespread dystrophy of all 20 nails cannot be diagnosed as 20-nail dystrophy or trachyonychia without the distinct morphologic features of thin brittle nails with pronounced longitudinal ridging.⁷

Prompt diagnosis and early intervention in nail lichen planus is crucial due to the potential for irreversible scarring. First-line treatment options include intramatricial and intramuscular triamcinolone acetonide for 3 to 6 months.⁴ Second-line therapies include oral retinoids such as acitretin and alitretinoin and immunosuppressive agents such as azathioprine, mycophenolate mofetil, and cyclosporine. Other reported treatment options include clobetasol propionate, tacrolimus, dapsone, griseofulvin, etanercept, hydroxychloroquine, methotrexate, and UV therapy.⁴

THE DIAGNOSIS: Nail Lichen Planus

The biopsy results showed features of hypergranulosis of the matricial epithelium, irregular acanthosis, apoptotic keratinocytes along the basal layer, and a lichenoid infiltrate consistent with nail lichen planus. The patient was started on topical clobetasol propionate 0.05% applied once daily under overnight occlusion. Additionally, intramatricial triamcinolone acetonide (2.5 mg/mL; 0.1 mL per injection) was administered into the affected nail matrix at 4-week intervals for a total of 2 sessions. At the 2-month follow-up visit, the patient reported improvement in longitudinal ridging; however, he subsequently was lost to follow-up.

Nail lichen planus is a chronic inflammatory disorder that occurs in 10% to 15% of patients with lichen planus worldwide and is more common in adults than children.¹ It can manifest independently or concurrently with cutaneous and/or oral mucosal involvement. The fingernails are more commonly affected than the toenails.² The clinical features of nail lichen planus can be classified based on involvement of the nail matrix (longitudinal ridging, red lunula, thinning of the nail plate, koilonychia, trachyonychia, pterygium, and anonychia) or nail bed (onycholysis, subungual hyperkeratosis, and splinter hemorrhages).¹

In our patient, who presented with chronic progressive nail dystrophy affecting all 20 nails, onychomycosis, nail psoriasis, onychotillomania, and idiopathic trachyonychia were included in the differential.¹

Onychomycosis manifests as white or yellow-brown discoloration of the nail, onycholysis, subungual hyperkeratosis, and thickening of the nail plate. Diagnosis is confirmed by the presence of septate hyphae (dermatophytes) or budding yeast cells (Candida species) on a potassium hydroxide mount. Other diagnostic modalities include dermoscopy, fungal culture, and histopathology of nail clippings, with demonstration of fungal elements identified on periodic acid-Schiff staining (eFigure 1).³

Nail psoriasis characteristically manifests as deep irregular pitting of the nails. Other features favoring psoriasis include involvement of the nail matrix manifesting as leukonychia, red lunula, and crumbling, as well as involvement of the nail bed manifesting as onycholysis, subungual hyperkeratosis, salmon patches/oil spots, and splinter hemorrhages (eFigure 2).⁴ Diagnosis primarily is clinical, supported by histopathology when uncertainty exists.

Onychotillomania is a behavioral disorder characterized by an irresistible urge or impulse in patients to either pick or pull at their fingernails and/or toenails. Clinicopathologic features of the involved nails are nonspecific and atypical, with possible involvement of periungual and digital skin. Diagnosis of onychotillomania is challenging.⁵ Dermoscopic features including anonychia with multiple obliquely arranged nail bed hemorrhages, gray pigmentation of the nail bed, and wavy lines, has been proposed to aid the diagnosis of onychotillomania.⁶

Idiopathic trachyonychia is isolated nail involvement characterized by rough, ridged, and thin nails affecting multiple or all of the fingernails and toenails without an underlying systemic or dermatologic condition (eFigure 3). The terms trachyonychia and 20-nail dystrophy have been used interchangeably in the literature; however, trachyonychia does not always involve all 20 nails. Other conditions causing widespread dystrophy of all 20 nails cannot be diagnosed as 20-nail dystrophy or trachyonychia without the distinct morphologic features of thin brittle nails with pronounced longitudinal ridging.⁷

Prompt diagnosis and early intervention in nail lichen planus is crucial due to the potential for irreversible scarring. First-line treatment options include intramatricial and intramuscular triamcinolone acetonide for 3 to 6 months.⁴ Second-line therapies include oral retinoids such as acitretin and alitretinoin and immunosuppressive agents such as azathioprine, mycophenolate mofetil, and cyclosporine. Other reported treatment options include clobetasol propionate, tacrolimus, dapsone, griseofulvin, etanercept, hydroxychloroquine, methotrexate, and UV therapy.⁴

THE DIAGNOSIS: Nail Lichen Planus

The biopsy results showed features of hypergranulosis of the matricial epithelium, irregular acanthosis, apoptotic keratinocytes along the basal layer, and a lichenoid infiltrate consistent with nail lichen planus. The patient was started on topical clobetasol propionate 0.05% applied once daily under overnight occlusion. Additionally, intramatricial triamcinolone acetonide (2.5 mg/mL; 0.1 mL per injection) was administered into the affected nail matrix at 4-week intervals for a total of 2 sessions. At the 2-month follow-up visit, the patient reported improvement in longitudinal ridging; however, he subsequently was lost to follow-up.

Nail lichen planus is a chronic inflammatory disorder that occurs in 10% to 15% of patients with lichen planus worldwide and is more common in adults than children.¹ It can manifest independently or concurrently with cutaneous and/or oral mucosal involvement. The fingernails are more commonly affected than the toenails.² The clinical features of nail lichen planus can be classified based on involvement of the nail matrix (longitudinal ridging, red lunula, thinning of the nail plate, koilonychia, trachyonychia, pterygium, and anonychia) or nail bed (onycholysis, subungual hyperkeratosis, and splinter hemorrhages).¹

In our patient, who presented with chronic progressive nail dystrophy affecting all 20 nails, onychomycosis, nail psoriasis, onychotillomania, and idiopathic trachyonychia were included in the differential.¹

Onychomycosis manifests as white or yellow-brown discoloration of the nail, onycholysis, subungual hyperkeratosis, and thickening of the nail plate. Diagnosis is confirmed by the presence of septate hyphae (dermatophytes) or budding yeast cells (Candida species) on a potassium hydroxide mount. Other diagnostic modalities include dermoscopy, fungal culture, and histopathology of nail clippings, with demonstration of fungal elements identified on periodic acid-Schiff staining (eFigure 1).³

Nail psoriasis characteristically manifests as deep irregular pitting of the nails. Other features favoring psoriasis include involvement of the nail matrix manifesting as leukonychia, red lunula, and crumbling, as well as involvement of the nail bed manifesting as onycholysis, subungual hyperkeratosis, salmon patches/oil spots, and splinter hemorrhages (eFigure 2).⁴ Diagnosis primarily is clinical, supported by histopathology when uncertainty exists.

Onychotillomania is a behavioral disorder characterized by an irresistible urge or impulse in patients to either pick or pull at their fingernails and/or toenails. Clinicopathologic features of the involved nails are nonspecific and atypical, with possible involvement of periungual and digital skin. Diagnosis of onychotillomania is challenging.⁵ Dermoscopic features including anonychia with multiple obliquely arranged nail bed hemorrhages, gray pigmentation of the nail bed, and wavy lines, has been proposed to aid the diagnosis of onychotillomania.⁶

Idiopathic trachyonychia is isolated nail involvement characterized by rough, ridged, and thin nails affecting multiple or all of the fingernails and toenails without an underlying systemic or dermatologic condition (eFigure 3). The terms trachyonychia and 20-nail dystrophy have been used interchangeably in the literature; however, trachyonychia does not always involve all 20 nails. Other conditions causing widespread dystrophy of all 20 nails cannot be diagnosed as 20-nail dystrophy or trachyonychia without the distinct morphologic features of thin brittle nails with pronounced longitudinal ridging.⁷

Prompt diagnosis and early intervention in nail lichen planus is crucial due to the potential for irreversible scarring. First-line treatment options include intramatricial and intramuscular triamcinolone acetonide for 3 to 6 months.⁴ Second-line therapies include oral retinoids such as acitretin and alitretinoin and immunosuppressive agents such as azathioprine, mycophenolate mofetil, and cyclosporine. Other reported treatment options include clobetasol propionate, tacrolimus, dapsone, griseofulvin, etanercept, hydroxychloroquine, methotrexate, and UV therapy.⁴

To see what is in front of one’s nose needs a constant struggle.
George Orwell (1946)¹

In 2019, the Veterans Health Administration (VHA) initiated a process to become a high reliability organization (HRO).² The COVID-19 pandemic has been described in medical literature as a volatile, uncertain, complex, and ambiguous (VUCA) event, underscoring the necessity of resilient communication strategies.³ Challenges posed by 2024 Hurricanes Helene and Milton further highlighted the need for resilient communication strategies within HRO implementation.

Central to the HRO journey within the VHA has been the development of tiered huddles, an evolution of the safety huddle concept.⁴ Emerging organically as an effective communication mechanism across multiple facilities between 2019 and 2020, tiered huddles were, in part, spurred by the onset of COVID-19. Tiered huddles represent a proactive approach to identifying and addressing organizational threats in their early stages, thereby preventing their escalation to a VUCA-laden crisis.⁵ When conditions evolve beyond the horizon of tractability, where challenges are easily identified and resolved, tiered huddles serve as a resilient mechanism to restore dynamic equilibrium within the organization.^6,7

This article describes how tiered huddles were integrated within Veterans Integrated Service Network (VISN) 4 and explores why these huddles are essential, particularly in the context of VUCA events. What began as a local-level tactic has now gained widespread acceptance and continues to evolve across the VHA with full support from the US Department of Veterans Affairs (VA) Under Secretary for Health.⁸

The VHA is divided into 18 VISNs. Nine VA Medical Centers (VAMCs) and 46 outpatient clinics across Pennsylvania, Delaware, and parts of Ohio, New York, and New Jersey make up VISN 4. Disseminating vital information across VISN 4, in addition to the 17 other VISNs—including 170 VAMCs and 1193 clinics—presents a formidable challenge. As the largest integrated system in the US, the VHA is realigning its workforce to address organizational inefficiencies. An enterprise of this scale, shaped by recurrent organizational change, faces ongoing challenges in sustaining clear communication across all levels. These transitions create uncertainty for staff as roles and resources shift, underscoring the need for dependable vertical and horizontal information flow. Tiered huddles offer a steady means to support coordinated communication and strengthen the system’s ability to adapt.⁹

ERIE VA MEDICAL CENTER HRO JOURNEY

In 2019, John Gennaro, the Erie VAMC executive director, attended a presentation that showcased the Cleveland Clinic’s tiered huddle process, with an opportunity to observe its 5-tiered system.¹⁰ Erie VAMC already had a 3-tiered huddle system, but the Cleveland Clinic’s more robust model inspired Gennaro to propose a VISN 4 pilot program. Tiered huddles were perceived as innovative, yet not fully embraced within the VHA; nonetheless, VISN 4, much like several other VISNs, moved forward and established a VISN-level (Tier 4) huddle.⁸ It is important to note that there was a notional fifth-tier capability as VISN and program office leaders already participated in daily VHA-wide meetings under the auspices of the Hospital Operations Center (HOC).

Expanding the Tiered Huddle Process

The Erie VAMC huddle process begins with the unit level Managers and Frontline Staff (Tier 1), then moves to Service Chiefs and Managers (Tier 2). Tier 3 involves facility executive leadership team and service chiefs, clinical directors and top VAMC administrators (these configurations may vary depending on context). The sequencing and flow of information is bidirectional across levels, reflecting the importance of closed-loop communication to ensure staff at all levels understand that issues raised are followed up on and/or closed out (Figure 1).²

Tier 4 composition may vary among VISNs depending on size and unique mission requirements.^8,11 The VISN 4 Tier 4 huddle includes the VISN director, 9 VAMC directors, and key network administrators and clinical experts. The Tier 5 huddle includes 18 VISN 4 directors with the VHA HOC (Figure 2). The tiered huddle process emphasizes team-based culture and psychological safety.^12-15 Staff at all levels are encouraged to identify and transparently resolve issues, fostering a proactive and problem-solving environment across the organization. A more nuanced and detailed process across tier levels is depicted in the Table.

The vetting and distillation of information can present challenges as vital information ascends and spreads across organization levels. Visual management systems (VMS), whether a whiteboard or a digital platform, are key to facilitate decision-making related to what needs to be prioritized and disseminated at each tier level.^2,8 At Tier 5, the HOC uses a digital VMS to provide a structured, user-friendly format for categorizing issues and topics and enhances clarity and accessibility (Figure 3). The Tier 5 VMS also facilitates tracking and reciprocal information exchange, helping to close the loop on emerging issues by monitoring their progression and resolution up and across tiers.^2,8 The Tier 5 huddle process and technology supporting continue to evolve offering increasing sophistication in organizational situational awareness and responsiveness.

VUCA: A Lens for Health Care Challenges

First introduced by social scientists at the US Army War College in 1995, VUCA describes complex and unpredictable conditions often encountered in military operations.^16,17 Prompted by the COVID-19 pandemic, the acronym VUCA gained recognition in health care, as leaders acknowledged the challenge of navigating rapidly changing environments. van Stralen, Byrum and Inozu, recognized authorities in high reliability, cited VUCA as the rationale for implementing HRO principles and practices. They argued that “HRO solves the problem of operations and performance in a volatile, uncertain, complex, ambiguous environment.” ¹⁸ To fully appreciate the VUCA environment and its relevance to health care, it is essential to unpack the 4 components of the acronym: volatile, uncertain, complex, and ambiguous.

Volatile refers to the speed and unpredictability of change. Health care systems are interactively complex and tightly coupled, meaning that changes in 1 part of the system can rapidly impact others.^6,18,19 This high degree of interdependence amplifies volatility, especially when unexpected events occur. The rapid spread of COVID- 19 and the evolving nature of its transmission challenged health care systems’ ability to respond swiftly and effectively. Volatility also may emerge in acute medical situations, such as the rapid deterioration of a patient’s condition.

Uncertain captures the lack of predictability inherent in complex systems. In health care, uncertainty arises when there is insufficient information or when an excess of data make it difficult to discern meaningful patterns. COVID-19 and recent natural disasters have introduced profound uncertainty, as the disease’s behavior, transmission, and impact were initially unknown. Health care practitioners struggled to make decisions in real time, lacking clear guidance or precedent.^3,20 While health care planning and established protocols are grounded in predictability, the COVID-19 pandemic revealed that as complexity increases, predictability diminishes. Moreover, complexity can complicate protocol selection, as situations may arise in which multiple protocols conflict or compete. The cognitive challenge of operating in this environment is analogous to what military strategists call the fog of war, where situational awareness is low and decision-makers must navigate without clarity.²¹ Tiered huddles, a core practice in HROs, mitigate uncertainty by fostering real-time communication and shared situational awareness among teams.²⁰

Complex refers to the intricate interplay of multiple, interconnected factors within a system.²² In health care, this complexity is heightened by the sociotechnical nature of the field—where human, technology, and organizational elements all converge.¹⁹ Systems designed to prevent failures, such as redundancies and safety protocols, can themselves contribute to increased complexity. HRO practices such as tiered huddles are implemented to mitigate the risk of catastrophic failure by fostering collaborative sensemaking, enhanced situational awareness, and rapid problem-solving.^5,20,23

Ambiguous refers to situations in which multiple interpretations, causes, or outcomes are possible. It explains how, despite following protocols, failure can still occur, or how individuals may reach different conclusions from the same data. Ambiguity does not offer binary solutions; instead, it presents a murky, multifaceted reality that requires thoughtful interpretation and adaptive responses. In these moments, leaders must act decisively, even in the absence of complete information, making trade-offs that balance immediate needs with long-term consequences.

MANAGING VUCA ENVIRONMENTS WITH TIERED HUDDLES

The tiered huddle process provides several key benefits that enable real-time issue resolution. These include the rapid dissemination of vital information, enhanced agility and resilience, and improved sensemaking within a VUCA environment. Additionally, tiered huddles prevent organizational drift by fostering heightened situational awareness. The tiered huddle process also supports leadership development, as unit-level leaders gain valuable insights into strategic decision-making through active participation. Each component is outlined in the following section.

Spread: The Challenge of Communicating

“The hallmark of a great organization is how quickly bad news travels upward,” argued Jay Forrester, the father of system dynamics.²⁴ Unfortunately, steep power gradients and siloed organizational structures inhibit the flow of unfavorable information from frontline staff to senior leadership. This suppression is not necessarily intentional but is often a byproduct of organizational culture. Tiered huddles address the weakness of top-down communication models by promoting a reciprocal, bidirectional information exchange, with an emphasis on closed-loop communication. Open communication can foster a culture of trust and transparency, allowing leaders to make more informed decisions and respond quickly to emerging risks.

Enhancing Agility and Resilience

Tiered huddles contribute to a mindful infrastructure, an important aspect of maintaining organizational awareness and agility.^21,25 A mindful infrastructure enables an organization to detect early warning signs of potential disruptions and respond to them before they escalate. In this sense, tiered huddles serve as a signal-sensing mechanism, providing the agility needed to adapt to changing circumstances and prevent patient harm. Tiered huddles facilitate self-organization, a concept from chaos theory known as autopoiesis. ²⁶ This self-organizing capability allows teams to develop novel solutions in response to unforeseen challenges, exemplifying the adaptability and resilience needed in a VUCA environment. The diverse backgrounds of tiered huddle participants—both cognitively and culturally—enable a broader range of perspectives, which is critical for making sound decisions in complex and uncertain situations. “HROs cultivate diversity not just because it helps them notice more in complex environments, but also because it helps them adapt to the complexities they do spot,” argues Weick et al.²⁷ This diversity of thought and experience enhances the organization’s ability to respond to complexity, much like firefighters continually adapt to the VUCA conditions they face.

Sensemaking and Sensitivity to Operations

Leaders at all levels must be attuned to what is happening both within and outside their organization. This continual sensing of the environment—looking for weak signals, threats, and opportunities—is important for HROs. This signal detection capability allows organizations to address problems in their nascent emerging state within a tractable horizon to successfully manage fluctuations. The horizon of tractability reflects a zone where weak signals and evolving issues can be identified, addressed, and resolved early before they evolve and cascade outside of safe operations. ⁷ Tiered huddles facilitate this process by creating a platform for team members to engage in respectful, collaborative dialogue. The diversity inherent in tiered huddles also supports sensemaking, a process of interpreting and understanding complex situations.²⁷ In a VUCA environment, this multiperspective approach helps filter out noise and identify the most important signals. Tiered huddles can help overcome the phenomenon of dysfunctional momentum associated with cognitive lockup, fixation error, and tunnel vision, in which individuals or teams fixate on a particular solution, thus missing important alternative views.^21,28 By fostering a common operating picture of the fluctuating environment, tiered huddles can enable more accurate decision-making and improve organizational resilience.

Avoiding Organizational Drift

One of the most significant contributions of tiered huddles is the ability to detect early signs of organizational drift, or subtle deviations from standard practices that can accumulate over time and lead to serious failures. By continuously monitoring for precursor conditions and weak signals, tiered huddles allow organizations to intervene early and prevent drift from becoming catastrophic.^29,30 This vigilance is essential in health care, where complacency can lead to patient harm. Tiered huddles foster a culture of mindfulness and accountability, ensuring that staff stay engaged and alert to potential risks. This proactive approach is a safeguard against human error and the gradual erosion of safety standards.

Leadership Development

Tiered huddles serve as a powerful tool for leadership development. Effective leaders must be able to anticipate potential risks and foresee system failures. Involving future leaders in tiered huddles can facilitate the transfer of these critical skills. When emerging leaders at lower tiers participate in ascending-tier huddles, they gain a unique opportunity to engage in a structured, collaborative setting. This environment provides a safe space to develop and practice strategic skills, enhancing their ability to think proactively and manage complexity. By integrating future leaders into tiered huddles, organizations offer essential, hands-on experience in real-time decision making. This experiential learning is invaluable for preparing leaders to navigate the demands of a VUCA environment.

CONCLUSIONS

Since implementing the tiered huddle process, the Erie VAMC and VISN 4 have emerged as early adopters of VUCA, thus contributing to the expansion of this innovative communication approach across the VHA. Tiered huddles strengthen organizational resilience and agility, facilitate critical information flow to manage risk, and support the cultivation of future leaders. The Erie VAMC director and the VISN 4 network director regard the expansion of tiered huddles, including Tiers 4 and 5, as an adaptable model for the VHA. While tiered huddles have not yet been mandated across the VHA, a pilot at the Tier 5 HOC level was initiated on May 20, 2024. In a complex world in which VUCA events will continue to be inevitable, implementation of robust tiered huddles within complex health care systems provides the opportunity for improved responses and delivery of care.

To see what is in front of one’s nose needs a constant struggle.
George Orwell (1946)¹

In 2019, the Veterans Health Administration (VHA) initiated a process to become a high reliability organization (HRO).² The COVID-19 pandemic has been described in medical literature as a volatile, uncertain, complex, and ambiguous (VUCA) event, underscoring the necessity of resilient communication strategies.³ Challenges posed by 2024 Hurricanes Helene and Milton further highlighted the need for resilient communication strategies within HRO implementation.

Central to the HRO journey within the VHA has been the development of tiered huddles, an evolution of the safety huddle concept.⁴ Emerging organically as an effective communication mechanism across multiple facilities between 2019 and 2020, tiered huddles were, in part, spurred by the onset of COVID-19. Tiered huddles represent a proactive approach to identifying and addressing organizational threats in their early stages, thereby preventing their escalation to a VUCA-laden crisis.⁵ When conditions evolve beyond the horizon of tractability, where challenges are easily identified and resolved, tiered huddles serve as a resilient mechanism to restore dynamic equilibrium within the organization.^6,7

This article describes how tiered huddles were integrated within Veterans Integrated Service Network (VISN) 4 and explores why these huddles are essential, particularly in the context of VUCA events. What began as a local-level tactic has now gained widespread acceptance and continues to evolve across the VHA with full support from the US Department of Veterans Affairs (VA) Under Secretary for Health.⁸

The VHA is divided into 18 VISNs. Nine VA Medical Centers (VAMCs) and 46 outpatient clinics across Pennsylvania, Delaware, and parts of Ohio, New York, and New Jersey make up VISN 4. Disseminating vital information across VISN 4, in addition to the 17 other VISNs—including 170 VAMCs and 1193 clinics—presents a formidable challenge. As the largest integrated system in the US, the VHA is realigning its workforce to address organizational inefficiencies. An enterprise of this scale, shaped by recurrent organizational change, faces ongoing challenges in sustaining clear communication across all levels. These transitions create uncertainty for staff as roles and resources shift, underscoring the need for dependable vertical and horizontal information flow. Tiered huddles offer a steady means to support coordinated communication and strengthen the system’s ability to adapt.⁹

ERIE VA MEDICAL CENTER HRO JOURNEY

In 2019, John Gennaro, the Erie VAMC executive director, attended a presentation that showcased the Cleveland Clinic’s tiered huddle process, with an opportunity to observe its 5-tiered system.¹⁰ Erie VAMC already had a 3-tiered huddle system, but the Cleveland Clinic’s more robust model inspired Gennaro to propose a VISN 4 pilot program. Tiered huddles were perceived as innovative, yet not fully embraced within the VHA; nonetheless, VISN 4, much like several other VISNs, moved forward and established a VISN-level (Tier 4) huddle.⁸ It is important to note that there was a notional fifth-tier capability as VISN and program office leaders already participated in daily VHA-wide meetings under the auspices of the Hospital Operations Center (HOC).

Expanding the Tiered Huddle Process

The Erie VAMC huddle process begins with the unit level Managers and Frontline Staff (Tier 1), then moves to Service Chiefs and Managers (Tier 2). Tier 3 involves facility executive leadership team and service chiefs, clinical directors and top VAMC administrators (these configurations may vary depending on context). The sequencing and flow of information is bidirectional across levels, reflecting the importance of closed-loop communication to ensure staff at all levels understand that issues raised are followed up on and/or closed out (Figure 1).²

Tier 4 composition may vary among VISNs depending on size and unique mission requirements.^8,11 The VISN 4 Tier 4 huddle includes the VISN director, 9 VAMC directors, and key network administrators and clinical experts. The Tier 5 huddle includes 18 VISN 4 directors with the VHA HOC (Figure 2). The tiered huddle process emphasizes team-based culture and psychological safety.^12-15 Staff at all levels are encouraged to identify and transparently resolve issues, fostering a proactive and problem-solving environment across the organization. A more nuanced and detailed process across tier levels is depicted in the Table.

The vetting and distillation of information can present challenges as vital information ascends and spreads across organization levels. Visual management systems (VMS), whether a whiteboard or a digital platform, are key to facilitate decision-making related to what needs to be prioritized and disseminated at each tier level.^2,8 At Tier 5, the HOC uses a digital VMS to provide a structured, user-friendly format for categorizing issues and topics and enhances clarity and accessibility (Figure 3). The Tier 5 VMS also facilitates tracking and reciprocal information exchange, helping to close the loop on emerging issues by monitoring their progression and resolution up and across tiers.^2,8 The Tier 5 huddle process and technology supporting continue to evolve offering increasing sophistication in organizational situational awareness and responsiveness.

VUCA: A Lens for Health Care Challenges

First introduced by social scientists at the US Army War College in 1995, VUCA describes complex and unpredictable conditions often encountered in military operations.^16,17 Prompted by the COVID-19 pandemic, the acronym VUCA gained recognition in health care, as leaders acknowledged the challenge of navigating rapidly changing environments. van Stralen, Byrum and Inozu, recognized authorities in high reliability, cited VUCA as the rationale for implementing HRO principles and practices. They argued that “HRO solves the problem of operations and performance in a volatile, uncertain, complex, ambiguous environment.” ¹⁸ To fully appreciate the VUCA environment and its relevance to health care, it is essential to unpack the 4 components of the acronym: volatile, uncertain, complex, and ambiguous.

Volatile refers to the speed and unpredictability of change. Health care systems are interactively complex and tightly coupled, meaning that changes in 1 part of the system can rapidly impact others.^6,18,19 This high degree of interdependence amplifies volatility, especially when unexpected events occur. The rapid spread of COVID- 19 and the evolving nature of its transmission challenged health care systems’ ability to respond swiftly and effectively. Volatility also may emerge in acute medical situations, such as the rapid deterioration of a patient’s condition.

Uncertain captures the lack of predictability inherent in complex systems. In health care, uncertainty arises when there is insufficient information or when an excess of data make it difficult to discern meaningful patterns. COVID-19 and recent natural disasters have introduced profound uncertainty, as the disease’s behavior, transmission, and impact were initially unknown. Health care practitioners struggled to make decisions in real time, lacking clear guidance or precedent.^3,20 While health care planning and established protocols are grounded in predictability, the COVID-19 pandemic revealed that as complexity increases, predictability diminishes. Moreover, complexity can complicate protocol selection, as situations may arise in which multiple protocols conflict or compete. The cognitive challenge of operating in this environment is analogous to what military strategists call the fog of war, where situational awareness is low and decision-makers must navigate without clarity.²¹ Tiered huddles, a core practice in HROs, mitigate uncertainty by fostering real-time communication and shared situational awareness among teams.²⁰

Complex refers to the intricate interplay of multiple, interconnected factors within a system.²² In health care, this complexity is heightened by the sociotechnical nature of the field—where human, technology, and organizational elements all converge.¹⁹ Systems designed to prevent failures, such as redundancies and safety protocols, can themselves contribute to increased complexity. HRO practices such as tiered huddles are implemented to mitigate the risk of catastrophic failure by fostering collaborative sensemaking, enhanced situational awareness, and rapid problem-solving.^5,20,23

Ambiguous refers to situations in which multiple interpretations, causes, or outcomes are possible. It explains how, despite following protocols, failure can still occur, or how individuals may reach different conclusions from the same data. Ambiguity does not offer binary solutions; instead, it presents a murky, multifaceted reality that requires thoughtful interpretation and adaptive responses. In these moments, leaders must act decisively, even in the absence of complete information, making trade-offs that balance immediate needs with long-term consequences.

MANAGING VUCA ENVIRONMENTS WITH TIERED HUDDLES

The tiered huddle process provides several key benefits that enable real-time issue resolution. These include the rapid dissemination of vital information, enhanced agility and resilience, and improved sensemaking within a VUCA environment. Additionally, tiered huddles prevent organizational drift by fostering heightened situational awareness. The tiered huddle process also supports leadership development, as unit-level leaders gain valuable insights into strategic decision-making through active participation. Each component is outlined in the following section.

Spread: The Challenge of Communicating

“The hallmark of a great organization is how quickly bad news travels upward,” argued Jay Forrester, the father of system dynamics.²⁴ Unfortunately, steep power gradients and siloed organizational structures inhibit the flow of unfavorable information from frontline staff to senior leadership. This suppression is not necessarily intentional but is often a byproduct of organizational culture. Tiered huddles address the weakness of top-down communication models by promoting a reciprocal, bidirectional information exchange, with an emphasis on closed-loop communication. Open communication can foster a culture of trust and transparency, allowing leaders to make more informed decisions and respond quickly to emerging risks.

Enhancing Agility and Resilience

Tiered huddles contribute to a mindful infrastructure, an important aspect of maintaining organizational awareness and agility.^21,25 A mindful infrastructure enables an organization to detect early warning signs of potential disruptions and respond to them before they escalate. In this sense, tiered huddles serve as a signal-sensing mechanism, providing the agility needed to adapt to changing circumstances and prevent patient harm. Tiered huddles facilitate self-organization, a concept from chaos theory known as autopoiesis. ²⁶ This self-organizing capability allows teams to develop novel solutions in response to unforeseen challenges, exemplifying the adaptability and resilience needed in a VUCA environment. The diverse backgrounds of tiered huddle participants—both cognitively and culturally—enable a broader range of perspectives, which is critical for making sound decisions in complex and uncertain situations. “HROs cultivate diversity not just because it helps them notice more in complex environments, but also because it helps them adapt to the complexities they do spot,” argues Weick et al.²⁷ This diversity of thought and experience enhances the organization’s ability to respond to complexity, much like firefighters continually adapt to the VUCA conditions they face.

Sensemaking and Sensitivity to Operations

Leaders at all levels must be attuned to what is happening both within and outside their organization. This continual sensing of the environment—looking for weak signals, threats, and opportunities—is important for HROs. This signal detection capability allows organizations to address problems in their nascent emerging state within a tractable horizon to successfully manage fluctuations. The horizon of tractability reflects a zone where weak signals and evolving issues can be identified, addressed, and resolved early before they evolve and cascade outside of safe operations. ⁷ Tiered huddles facilitate this process by creating a platform for team members to engage in respectful, collaborative dialogue. The diversity inherent in tiered huddles also supports sensemaking, a process of interpreting and understanding complex situations.²⁷ In a VUCA environment, this multiperspective approach helps filter out noise and identify the most important signals. Tiered huddles can help overcome the phenomenon of dysfunctional momentum associated with cognitive lockup, fixation error, and tunnel vision, in which individuals or teams fixate on a particular solution, thus missing important alternative views.^21,28 By fostering a common operating picture of the fluctuating environment, tiered huddles can enable more accurate decision-making and improve organizational resilience.

Avoiding Organizational Drift

One of the most significant contributions of tiered huddles is the ability to detect early signs of organizational drift, or subtle deviations from standard practices that can accumulate over time and lead to serious failures. By continuously monitoring for precursor conditions and weak signals, tiered huddles allow organizations to intervene early and prevent drift from becoming catastrophic.^29,30 This vigilance is essential in health care, where complacency can lead to patient harm. Tiered huddles foster a culture of mindfulness and accountability, ensuring that staff stay engaged and alert to potential risks. This proactive approach is a safeguard against human error and the gradual erosion of safety standards.

Leadership Development

Tiered huddles serve as a powerful tool for leadership development. Effective leaders must be able to anticipate potential risks and foresee system failures. Involving future leaders in tiered huddles can facilitate the transfer of these critical skills. When emerging leaders at lower tiers participate in ascending-tier huddles, they gain a unique opportunity to engage in a structured, collaborative setting. This environment provides a safe space to develop and practice strategic skills, enhancing their ability to think proactively and manage complexity. By integrating future leaders into tiered huddles, organizations offer essential, hands-on experience in real-time decision making. This experiential learning is invaluable for preparing leaders to navigate the demands of a VUCA environment.

CONCLUSIONS

Since implementing the tiered huddle process, the Erie VAMC and VISN 4 have emerged as early adopters of VUCA, thus contributing to the expansion of this innovative communication approach across the VHA. Tiered huddles strengthen organizational resilience and agility, facilitate critical information flow to manage risk, and support the cultivation of future leaders. The Erie VAMC director and the VISN 4 network director regard the expansion of tiered huddles, including Tiers 4 and 5, as an adaptable model for the VHA. While tiered huddles have not yet been mandated across the VHA, a pilot at the Tier 5 HOC level was initiated on May 20, 2024. In a complex world in which VUCA events will continue to be inevitable, implementation of robust tiered huddles within complex health care systems provides the opportunity for improved responses and delivery of care.

To see what is in front of one’s nose needs a constant struggle.
George Orwell (1946)¹

In 2019, the Veterans Health Administration (VHA) initiated a process to become a high reliability organization (HRO).² The COVID-19 pandemic has been described in medical literature as a volatile, uncertain, complex, and ambiguous (VUCA) event, underscoring the necessity of resilient communication strategies.³ Challenges posed by 2024 Hurricanes Helene and Milton further highlighted the need for resilient communication strategies within HRO implementation.

Central to the HRO journey within the VHA has been the development of tiered huddles, an evolution of the safety huddle concept.⁴ Emerging organically as an effective communication mechanism across multiple facilities between 2019 and 2020, tiered huddles were, in part, spurred by the onset of COVID-19. Tiered huddles represent a proactive approach to identifying and addressing organizational threats in their early stages, thereby preventing their escalation to a VUCA-laden crisis.⁵ When conditions evolve beyond the horizon of tractability, where challenges are easily identified and resolved, tiered huddles serve as a resilient mechanism to restore dynamic equilibrium within the organization.^6,7

This article describes how tiered huddles were integrated within Veterans Integrated Service Network (VISN) 4 and explores why these huddles are essential, particularly in the context of VUCA events. What began as a local-level tactic has now gained widespread acceptance and continues to evolve across the VHA with full support from the US Department of Veterans Affairs (VA) Under Secretary for Health.⁸

The VHA is divided into 18 VISNs. Nine VA Medical Centers (VAMCs) and 46 outpatient clinics across Pennsylvania, Delaware, and parts of Ohio, New York, and New Jersey make up VISN 4. Disseminating vital information across VISN 4, in addition to the 17 other VISNs—including 170 VAMCs and 1193 clinics—presents a formidable challenge. As the largest integrated system in the US, the VHA is realigning its workforce to address organizational inefficiencies. An enterprise of this scale, shaped by recurrent organizational change, faces ongoing challenges in sustaining clear communication across all levels. These transitions create uncertainty for staff as roles and resources shift, underscoring the need for dependable vertical and horizontal information flow. Tiered huddles offer a steady means to support coordinated communication and strengthen the system’s ability to adapt.⁹

ERIE VA MEDICAL CENTER HRO JOURNEY

In 2019, John Gennaro, the Erie VAMC executive director, attended a presentation that showcased the Cleveland Clinic’s tiered huddle process, with an opportunity to observe its 5-tiered system.¹⁰ Erie VAMC already had a 3-tiered huddle system, but the Cleveland Clinic’s more robust model inspired Gennaro to propose a VISN 4 pilot program. Tiered huddles were perceived as innovative, yet not fully embraced within the VHA; nonetheless, VISN 4, much like several other VISNs, moved forward and established a VISN-level (Tier 4) huddle.⁸ It is important to note that there was a notional fifth-tier capability as VISN and program office leaders already participated in daily VHA-wide meetings under the auspices of the Hospital Operations Center (HOC).

Expanding the Tiered Huddle Process

The Erie VAMC huddle process begins with the unit level Managers and Frontline Staff (Tier 1), then moves to Service Chiefs and Managers (Tier 2). Tier 3 involves facility executive leadership team and service chiefs, clinical directors and top VAMC administrators (these configurations may vary depending on context). The sequencing and flow of information is bidirectional across levels, reflecting the importance of closed-loop communication to ensure staff at all levels understand that issues raised are followed up on and/or closed out (Figure 1).²

Tier 4 composition may vary among VISNs depending on size and unique mission requirements.^8,11 The VISN 4 Tier 4 huddle includes the VISN director, 9 VAMC directors, and key network administrators and clinical experts. The Tier 5 huddle includes 18 VISN 4 directors with the VHA HOC (Figure 2). The tiered huddle process emphasizes team-based culture and psychological safety.^12-15 Staff at all levels are encouraged to identify and transparently resolve issues, fostering a proactive and problem-solving environment across the organization. A more nuanced and detailed process across tier levels is depicted in the Table.

The vetting and distillation of information can present challenges as vital information ascends and spreads across organization levels. Visual management systems (VMS), whether a whiteboard or a digital platform, are key to facilitate decision-making related to what needs to be prioritized and disseminated at each tier level.^2,8 At Tier 5, the HOC uses a digital VMS to provide a structured, user-friendly format for categorizing issues and topics and enhances clarity and accessibility (Figure 3). The Tier 5 VMS also facilitates tracking and reciprocal information exchange, helping to close the loop on emerging issues by monitoring their progression and resolution up and across tiers.^2,8 The Tier 5 huddle process and technology supporting continue to evolve offering increasing sophistication in organizational situational awareness and responsiveness.

VUCA: A Lens for Health Care Challenges

First introduced by social scientists at the US Army War College in 1995, VUCA describes complex and unpredictable conditions often encountered in military operations.^16,17 Prompted by the COVID-19 pandemic, the acronym VUCA gained recognition in health care, as leaders acknowledged the challenge of navigating rapidly changing environments. van Stralen, Byrum and Inozu, recognized authorities in high reliability, cited VUCA as the rationale for implementing HRO principles and practices. They argued that “HRO solves the problem of operations and performance in a volatile, uncertain, complex, ambiguous environment.” ¹⁸ To fully appreciate the VUCA environment and its relevance to health care, it is essential to unpack the 4 components of the acronym: volatile, uncertain, complex, and ambiguous.

Volatile refers to the speed and unpredictability of change. Health care systems are interactively complex and tightly coupled, meaning that changes in 1 part of the system can rapidly impact others.^6,18,19 This high degree of interdependence amplifies volatility, especially when unexpected events occur. The rapid spread of COVID- 19 and the evolving nature of its transmission challenged health care systems’ ability to respond swiftly and effectively. Volatility also may emerge in acute medical situations, such as the rapid deterioration of a patient’s condition.

Uncertain captures the lack of predictability inherent in complex systems. In health care, uncertainty arises when there is insufficient information or when an excess of data make it difficult to discern meaningful patterns. COVID-19 and recent natural disasters have introduced profound uncertainty, as the disease’s behavior, transmission, and impact were initially unknown. Health care practitioners struggled to make decisions in real time, lacking clear guidance or precedent.^3,20 While health care planning and established protocols are grounded in predictability, the COVID-19 pandemic revealed that as complexity increases, predictability diminishes. Moreover, complexity can complicate protocol selection, as situations may arise in which multiple protocols conflict or compete. The cognitive challenge of operating in this environment is analogous to what military strategists call the fog of war, where situational awareness is low and decision-makers must navigate without clarity.²¹ Tiered huddles, a core practice in HROs, mitigate uncertainty by fostering real-time communication and shared situational awareness among teams.²⁰

Complex refers to the intricate interplay of multiple, interconnected factors within a system.²² In health care, this complexity is heightened by the sociotechnical nature of the field—where human, technology, and organizational elements all converge.¹⁹ Systems designed to prevent failures, such as redundancies and safety protocols, can themselves contribute to increased complexity. HRO practices such as tiered huddles are implemented to mitigate the risk of catastrophic failure by fostering collaborative sensemaking, enhanced situational awareness, and rapid problem-solving.^5,20,23

Ambiguous refers to situations in which multiple interpretations, causes, or outcomes are possible. It explains how, despite following protocols, failure can still occur, or how individuals may reach different conclusions from the same data. Ambiguity does not offer binary solutions; instead, it presents a murky, multifaceted reality that requires thoughtful interpretation and adaptive responses. In these moments, leaders must act decisively, even in the absence of complete information, making trade-offs that balance immediate needs with long-term consequences.

MANAGING VUCA ENVIRONMENTS WITH TIERED HUDDLES

The tiered huddle process provides several key benefits that enable real-time issue resolution. These include the rapid dissemination of vital information, enhanced agility and resilience, and improved sensemaking within a VUCA environment. Additionally, tiered huddles prevent organizational drift by fostering heightened situational awareness. The tiered huddle process also supports leadership development, as unit-level leaders gain valuable insights into strategic decision-making through active participation. Each component is outlined in the following section.

Spread: The Challenge of Communicating

“The hallmark of a great organization is how quickly bad news travels upward,” argued Jay Forrester, the father of system dynamics.²⁴ Unfortunately, steep power gradients and siloed organizational structures inhibit the flow of unfavorable information from frontline staff to senior leadership. This suppression is not necessarily intentional but is often a byproduct of organizational culture. Tiered huddles address the weakness of top-down communication models by promoting a reciprocal, bidirectional information exchange, with an emphasis on closed-loop communication. Open communication can foster a culture of trust and transparency, allowing leaders to make more informed decisions and respond quickly to emerging risks.

Enhancing Agility and Resilience

Tiered huddles contribute to a mindful infrastructure, an important aspect of maintaining organizational awareness and agility.^21,25 A mindful infrastructure enables an organization to detect early warning signs of potential disruptions and respond to them before they escalate. In this sense, tiered huddles serve as a signal-sensing mechanism, providing the agility needed to adapt to changing circumstances and prevent patient harm. Tiered huddles facilitate self-organization, a concept from chaos theory known as autopoiesis. ²⁶ This self-organizing capability allows teams to develop novel solutions in response to unforeseen challenges, exemplifying the adaptability and resilience needed in a VUCA environment. The diverse backgrounds of tiered huddle participants—both cognitively and culturally—enable a broader range of perspectives, which is critical for making sound decisions in complex and uncertain situations. “HROs cultivate diversity not just because it helps them notice more in complex environments, but also because it helps them adapt to the complexities they do spot,” argues Weick et al.²⁷ This diversity of thought and experience enhances the organization’s ability to respond to complexity, much like firefighters continually adapt to the VUCA conditions they face.

Sensemaking and Sensitivity to Operations

Leaders at all levels must be attuned to what is happening both within and outside their organization. This continual sensing of the environment—looking for weak signals, threats, and opportunities—is important for HROs. This signal detection capability allows organizations to address problems in their nascent emerging state within a tractable horizon to successfully manage fluctuations. The horizon of tractability reflects a zone where weak signals and evolving issues can be identified, addressed, and resolved early before they evolve and cascade outside of safe operations. ⁷ Tiered huddles facilitate this process by creating a platform for team members to engage in respectful, collaborative dialogue. The diversity inherent in tiered huddles also supports sensemaking, a process of interpreting and understanding complex situations.²⁷ In a VUCA environment, this multiperspective approach helps filter out noise and identify the most important signals. Tiered huddles can help overcome the phenomenon of dysfunctional momentum associated with cognitive lockup, fixation error, and tunnel vision, in which individuals or teams fixate on a particular solution, thus missing important alternative views.^21,28 By fostering a common operating picture of the fluctuating environment, tiered huddles can enable more accurate decision-making and improve organizational resilience.

Avoiding Organizational Drift

One of the most significant contributions of tiered huddles is the ability to detect early signs of organizational drift, or subtle deviations from standard practices that can accumulate over time and lead to serious failures. By continuously monitoring for precursor conditions and weak signals, tiered huddles allow organizations to intervene early and prevent drift from becoming catastrophic.^29,30 This vigilance is essential in health care, where complacency can lead to patient harm. Tiered huddles foster a culture of mindfulness and accountability, ensuring that staff stay engaged and alert to potential risks. This proactive approach is a safeguard against human error and the gradual erosion of safety standards.

Leadership Development

Tiered huddles serve as a powerful tool for leadership development. Effective leaders must be able to anticipate potential risks and foresee system failures. Involving future leaders in tiered huddles can facilitate the transfer of these critical skills. When emerging leaders at lower tiers participate in ascending-tier huddles, they gain a unique opportunity to engage in a structured, collaborative setting. This environment provides a safe space to develop and practice strategic skills, enhancing their ability to think proactively and manage complexity. By integrating future leaders into tiered huddles, organizations offer essential, hands-on experience in real-time decision making. This experiential learning is invaluable for preparing leaders to navigate the demands of a VUCA environment.

CONCLUSIONS

Since implementing the tiered huddle process, the Erie VAMC and VISN 4 have emerged as early adopters of VUCA, thus contributing to the expansion of this innovative communication approach across the VHA. Tiered huddles strengthen organizational resilience and agility, facilitate critical information flow to manage risk, and support the cultivation of future leaders. The Erie VAMC director and the VISN 4 network director regard the expansion of tiered huddles, including Tiers 4 and 5, as an adaptable model for the VHA. While tiered huddles have not yet been mandated across the VHA, a pilot at the Tier 5 HOC level was initiated on May 20, 2024. In a complex world in which VUCA events will continue to be inevitable, implementation of robust tiered huddles within complex health care systems provides the opportunity for improved responses and delivery of care.

Rural dermatology is not as simple as it seems. For some, it means being the only dermatologist in a county where patients drive 3 hours for an appointment; for others, it means practicing in a mid-sized town and serving as both community doctor and regional referral point. Too often, rural dermatology is dismissed as isolating or career limiting, but the truth is very different. Rural dermatologists see plenty of common conditions such as acne and eczema, but they also see complex inflammatory diseases and advanced skin cancers that reflect delays in care for patients living in rural communities in the United States. Careers in rural dermatology can be flexible and creative, ranging from private practice to hospital employment to hybrid models that blend community and academic life.

The myths persist: You will lack colleagues. Your practice will be thin. You must sacrifice academic engagement. In reality, rural practice offers variety, leadership opportunities, and the chance to influence the health of entire communities in profound ways. In this article, we aim to unpack what rural dermatology actually looks like as a potential career path for residents, with a focus on private-academic hybrid and hospital-based practice models.

What Does Rural Really Mean?

Definitions of the term rural vary. For the US Census Bureau, it is synonymous with nonurban, and for the Office of Management and Budget, the term ­nonmetropolitan is preferred. The US Department of Agriculture’s ­Rural-Urban Commuting Area codes recognize a continuum of classifications from micropolitan to remote. In practice, the term rural covers a wide spectrum: the rolling farmlands of the Midwest, the mountains of Montana, the bayous of the South, the Native American reservations in New Mexico, and everything in between. It is not one uniform reality—rural America is diverse, resilient, and deeply connected.

A Day in Rural Practice

Daily clinic flow may look familiar: a full schedule, a mix of new and established patients, and frequent simple procedures such as biopsies and corticosteroid injections. But the scope of practice is wider. You become the dermatologist for hundreds of miles in every direction, managing most conditions locally while referring select cases to subspecialty centers.

Case variety is striking. Neglected tumors, unusual inflammatory presentations, pediatric conditions, and occupational dermatoses/injuries appear alongside the routine. Each day requires flexibility, judgment, confidence, and the ability to think outside the box. You must consider how a patient’s seasonal work, such as ranching or farming, and/or their total commute time impacts the risk-benefit discussion around treatment recommendations.

Matthew P. Shaffer, MD (Salina, Kansas), who has practiced rural dermatology for more than 20 years, explained that the breadth of dermatologic cases in which he served as the expert was both exciting and intimidating, but it became clear that this was the right professional path for him (email communication, September 5, 2025). In small communities, your role extends beyond the clinic walls. You will see patients at the grocery store, the library, and school events. That continuity fosters loyalty and accountability in ways that are hard to quantify.

Hybrid Partnerships and Hospital-Based Practice

Many practice structures exist: independent clinics, multispecialty groups, hospital employment, and increasingly, hybrid partnerships with academic centers.

Academic institutions have recognized the importance of rural exposure, and many now collaborate with rural dermatologists. For example, Heartland Dermatology in Salina, Kansas, where 2 of the authors (B.R.L. and T.G.) practice, partners with St. Louis University in Missouri to provide a residency track and rotations in rural clinics.

Rural-based hospital systems can create similar structures. Monument Health Dermatology in Spearfish, South Dakota, is integrated into the fabric of the community’s larger rural health care model. The physician (M.E.L.) collaborates daily with primary care providers, surgeons, and oncologists through a shared electronic health record (sometimes even through telephone speed-dial given the close collegiality of small-town providers). Patients come from across 4 states, some driving 6 hours each way. Patients who once doubted whether dermatology was worth the trip will consistently return for follow-up care once trust is earned. The stability of hospital employment supports volunteer faculty positions and a free satellite clinic in partnership with a local Lakota Tribal health center. There is never a dull day: the providers see urgent add-ons daily, which keeps them on their toes but in exchange brings immense reward. This includes a recent case from rural Wyoming: a complex mixed infantile hemangioma on the mid face just entering the rapid proliferation phase. Propranolol was started immediately, as opposed to months later when it was too late—a common complication for the majority of rural patients by the time to get to a dermatologist.

The Hub-and-Spoke Model

Complex cases can overwhelm rural practices, and this is when the hub-and-spoke model is invaluable. Dermatologists embed in local communities as spokes, while subspecialty services such as pediatric dermatology, dermatopathology, or Mohs micrographic surgery remain centralized at hubs. The hubs can be but do not have to be academic institutions; for Heartland Dermatology in Kansas, private practices fulfill both hub and spoke roles. With that said, 10 states do not have academic dermatology programs.¹ Mohs surgeons and pediatric dermatologists still can establish robust and successful independent rural subspecialty practices outside academic hubs. Christopher Gasbarre, DO (Spearfish, South Dakota), a board-certified, fellowship-trained Mohs surgeon in rural practice, advises residents to be confident in their abilities and to trust their training, noting that they often will be asked to manage complicated cases because of patient travel and cost constraints; however, clinicians should recognize their own limitations and those of nearby specialists and develop a referral network for cases that require multidisciplinary care (text communication, September 14, 2025).

The hub-and-spoke models—whether they entail an academic center as the hub with private practices as the spokes, or a network of private practices that include rural subspecialists—allows rural dermatologists to remain trusted local experts while ensuring that patients can access advanced care via a more streamlined referral process/network. The challenge is triage: what can be managed locally and what must patients travel for? As Dr. Shaffer explained, decisions about whether care is managed locally or referred to a hub often depend on the experience and comfort level of both the physician and the patient (email communication, September 5, 2025). Ultimately, continuity and trust are central. Patients rely on their local dermatologist to guide these decisions, and that guidance makes the model effective.

Finding the Right Fit

The idea that rural practice means being stuck in a small solo clinic is outdated. Multiple pathways exist, each with strengths and challenges. Independent private practice offers maximum autonomy and deep community integration, though financial and staffing risks are yours to manage. Hospital employment with outreach clinics provides stability, benefits, and collegiality, but bureaucracy can limit innovation and efficiency. Private equity platforms supply resources and rapid growth, but alignment with mission and autonomy must be weighed carefully. Hybrid joint ventures with hospitals combine private control and institutional support, but contracts can be complex. Locum tenens–to-permanent arrangements let you try rural life with minimal commitment, but continuity with patients may be sacrificed. A self-screener can clarify your path: How much autonomy do I want? Do I prefer predictability or variety? How important are procedures, teaching, or community roles? Answer these questions honestly and pair that insight with mentor guidance.

Getting Started: A 90-Day Outline

Launching a rural dermatology clinic is equal parts vision and structure. A focused 90-day plan can make the difference between a smooth opening and early frustration. Think in 4 domains: site selection, employment and licensing, credentialing and contracting, and operations. Even in a compressed timeline, dozens of small but crucial tasks may surface. There are resources—such as the Medical Group Management Association’s practice start-up checklist—that can provide a roadmap, ensuring no detail is overlooked as you transform a vision into a functioning clinic.²

Site Selection—First, determine whether you are opening a new standalone clinic, extending an existing practice, or creating a part-time satellite. Referral mapping with local primary care providers is essential, as is a scan of payer mix and dermatologist density in the region to ensure sustainability.

Employment and Licensing—Confirm state licensure and Drug Enforcement Administration registration and initiate hospital privileges early. These processes can stretch across the entire 90-day window, so starting immediately is critical.

Credentialing and Contracting—Applications with commercial and federal payers, along with Council for Affordable Quality Healthcare updates, often consume weeks if not months. If you plan to perform office microscopy or establish a dermatopathology laboratory, begin the Clinical Laboratory Improvement Amendments certification process in parallel.

Operations—Once the regulatory wheels are in motion, shift to building your practice infrastructure. Secure space, weigh lease vs purchase, and consider partnerships with local hospitals for shared clinic facilities. Recruit staff with dermatology-specific skills such as clinical photography and biopsy assistance. Implement an electronic health record, set up payroll and malpractice insurance, and establish supply chains for everything from liquid nitrogen to surgical trays. Decide whether revenue cycle management will be in-house or outsourced and finalize dermatopathology workflows including courier and transport agreements.

Compensation and Career Sustainability

Compensation in rural dermatology mirrors that of other clinical settings: base salary with productivity bonuses, revenue pooling, or relative value unit structures. Financial planning is crucial. Develop a pro forma that models patient volume, expenses, and realistic growth. Risks exist, including payer mix, staffing, and competition, but the demand for care in underserved areas often offsets these, and communities may support practices with reduced overhead and strong loyalty. Hospital systems may add stipends for supervising advanced practitioners or outreach travel. Loan repayment programs, tax credits, and grants can further enhance packages. Consider checking with the state’s Office of Rural Health.

Career sustainability ultimately depends on more than finances. Geography, amenities, schedule flexibility, autonomy in medical decision-making, work-life balance, the value of being part of and serving a community, and other personal values will shape your “best-fit” practice model. Ask whether you can envision yourself thriving in the community you would be serving.

Broader Efforts and Community

No one builds a rural dermatology practice alone. That is why one of the authors (M.E.L.) created the Rural Access to Dermatology Society (https://www.radsociety.org/), a nonprofit organization connecting dermatologists, residents, and medical students with a shared mission. The organization supports residents through scholarships, mentorship, and telementoring. Faculty can contribute through advocacy, residency track development, and outreach to uniquely underserved rural populations such as Native American reservations where access to dermatology care remains severely limited. Joining can be as simple as attending a webinar, finding a mentor, or volunteering at a free clinic. You do not need to launch your own clinic to get involved; you can begin by connecting with a network already laying the foundation.

Teledermatology and Academic Tracks

Teledermatology and academic initiatives enhance rural care but do not replace in-person practice. Store-and-forward consultations extend reach but cannot match the continuity and trust of long-term patient relationships. Academic rural tracks prepare residents for unique challenges, but someone must staff the clinics. Private and hybrid models remain the backbone of rural access, where dermatologists take on the responsibility and the joy of being the local expert.

Final Thoughts

At its heart, rural dermatology is about trust and presence. Patients will share stories of delayed care, of driving hours for an appointment, of feeling invisible in the health care system. When you choose this path, you are not just filling a workforce gap, you are changing trajectories of lives, families, and communities. The rewards are not easily measured in relative value units or contracts; they show up in the loyalty of patients who return year after year, in the gratitude of families who no longer have to travel to “the big city,” and in the satisfaction of building something bigger than yourself. As Dr. Shaffer noted, he views success primarily in relational terms, reflected in long-term patient trust and continuity of care, particularly when individuals with serious conditions return over many years and entrust him with their ongoing management (email communication, September 5, 2025).

So here’s the invitation: bring one question to your mentor about rural practice and identify one rural site you could visit. The road less traveled in dermatology is closer than you think—and it might just be your path.

Rural dermatology is not as simple as it seems. For some, it means being the only dermatologist in a county where patients drive 3 hours for an appointment; for others, it means practicing in a mid-sized town and serving as both community doctor and regional referral point. Too often, rural dermatology is dismissed as isolating or career limiting, but the truth is very different. Rural dermatologists see plenty of common conditions such as acne and eczema, but they also see complex inflammatory diseases and advanced skin cancers that reflect delays in care for patients living in rural communities in the United States. Careers in rural dermatology can be flexible and creative, ranging from private practice to hospital employment to hybrid models that blend community and academic life.

The myths persist: You will lack colleagues. Your practice will be thin. You must sacrifice academic engagement. In reality, rural practice offers variety, leadership opportunities, and the chance to influence the health of entire communities in profound ways. In this article, we aim to unpack what rural dermatology actually looks like as a potential career path for residents, with a focus on private-academic hybrid and hospital-based practice models.

What Does Rural Really Mean?

Definitions of the term rural vary. For the US Census Bureau, it is synonymous with nonurban, and for the Office of Management and Budget, the term ­nonmetropolitan is preferred. The US Department of Agriculture’s ­Rural-Urban Commuting Area codes recognize a continuum of classifications from micropolitan to remote. In practice, the term rural covers a wide spectrum: the rolling farmlands of the Midwest, the mountains of Montana, the bayous of the South, the Native American reservations in New Mexico, and everything in between. It is not one uniform reality—rural America is diverse, resilient, and deeply connected.

A Day in Rural Practice

Daily clinic flow may look familiar: a full schedule, a mix of new and established patients, and frequent simple procedures such as biopsies and corticosteroid injections. But the scope of practice is wider. You become the dermatologist for hundreds of miles in every direction, managing most conditions locally while referring select cases to subspecialty centers.

Case variety is striking. Neglected tumors, unusual inflammatory presentations, pediatric conditions, and occupational dermatoses/injuries appear alongside the routine. Each day requires flexibility, judgment, confidence, and the ability to think outside the box. You must consider how a patient’s seasonal work, such as ranching or farming, and/or their total commute time impacts the risk-benefit discussion around treatment recommendations.

Matthew P. Shaffer, MD (Salina, Kansas), who has practiced rural dermatology for more than 20 years, explained that the breadth of dermatologic cases in which he served as the expert was both exciting and intimidating, but it became clear that this was the right professional path for him (email communication, September 5, 2025). In small communities, your role extends beyond the clinic walls. You will see patients at the grocery store, the library, and school events. That continuity fosters loyalty and accountability in ways that are hard to quantify.

Hybrid Partnerships and Hospital-Based Practice

Many practice structures exist: independent clinics, multispecialty groups, hospital employment, and increasingly, hybrid partnerships with academic centers.

Academic institutions have recognized the importance of rural exposure, and many now collaborate with rural dermatologists. For example, Heartland Dermatology in Salina, Kansas, where 2 of the authors (B.R.L. and T.G.) practice, partners with St. Louis University in Missouri to provide a residency track and rotations in rural clinics.

Rural-based hospital systems can create similar structures. Monument Health Dermatology in Spearfish, South Dakota, is integrated into the fabric of the community’s larger rural health care model. The physician (M.E.L.) collaborates daily with primary care providers, surgeons, and oncologists through a shared electronic health record (sometimes even through telephone speed-dial given the close collegiality of small-town providers). Patients come from across 4 states, some driving 6 hours each way. Patients who once doubted whether dermatology was worth the trip will consistently return for follow-up care once trust is earned. The stability of hospital employment supports volunteer faculty positions and a free satellite clinic in partnership with a local Lakota Tribal health center. There is never a dull day: the providers see urgent add-ons daily, which keeps them on their toes but in exchange brings immense reward. This includes a recent case from rural Wyoming: a complex mixed infantile hemangioma on the mid face just entering the rapid proliferation phase. Propranolol was started immediately, as opposed to months later when it was too late—a common complication for the majority of rural patients by the time to get to a dermatologist.

The Hub-and-Spoke Model

Complex cases can overwhelm rural practices, and this is when the hub-and-spoke model is invaluable. Dermatologists embed in local communities as spokes, while subspecialty services such as pediatric dermatology, dermatopathology, or Mohs micrographic surgery remain centralized at hubs. The hubs can be but do not have to be academic institutions; for Heartland Dermatology in Kansas, private practices fulfill both hub and spoke roles. With that said, 10 states do not have academic dermatology programs.¹ Mohs surgeons and pediatric dermatologists still can establish robust and successful independent rural subspecialty practices outside academic hubs. Christopher Gasbarre, DO (Spearfish, South Dakota), a board-certified, fellowship-trained Mohs surgeon in rural practice, advises residents to be confident in their abilities and to trust their training, noting that they often will be asked to manage complicated cases because of patient travel and cost constraints; however, clinicians should recognize their own limitations and those of nearby specialists and develop a referral network for cases that require multidisciplinary care (text communication, September 14, 2025).

The hub-and-spoke models—whether they entail an academic center as the hub with private practices as the spokes, or a network of private practices that include rural subspecialists—allows rural dermatologists to remain trusted local experts while ensuring that patients can access advanced care via a more streamlined referral process/network. The challenge is triage: what can be managed locally and what must patients travel for? As Dr. Shaffer explained, decisions about whether care is managed locally or referred to a hub often depend on the experience and comfort level of both the physician and the patient (email communication, September 5, 2025). Ultimately, continuity and trust are central. Patients rely on their local dermatologist to guide these decisions, and that guidance makes the model effective.

Finding the Right Fit

The idea that rural practice means being stuck in a small solo clinic is outdated. Multiple pathways exist, each with strengths and challenges. Independent private practice offers maximum autonomy and deep community integration, though financial and staffing risks are yours to manage. Hospital employment with outreach clinics provides stability, benefits, and collegiality, but bureaucracy can limit innovation and efficiency. Private equity platforms supply resources and rapid growth, but alignment with mission and autonomy must be weighed carefully. Hybrid joint ventures with hospitals combine private control and institutional support, but contracts can be complex. Locum tenens–to-permanent arrangements let you try rural life with minimal commitment, but continuity with patients may be sacrificed. A self-screener can clarify your path: How much autonomy do I want? Do I prefer predictability or variety? How important are procedures, teaching, or community roles? Answer these questions honestly and pair that insight with mentor guidance.

Getting Started: A 90-Day Outline

Launching a rural dermatology clinic is equal parts vision and structure. A focused 90-day plan can make the difference between a smooth opening and early frustration. Think in 4 domains: site selection, employment and licensing, credentialing and contracting, and operations. Even in a compressed timeline, dozens of small but crucial tasks may surface. There are resources—such as the Medical Group Management Association’s practice start-up checklist—that can provide a roadmap, ensuring no detail is overlooked as you transform a vision into a functioning clinic.²

Site Selection—First, determine whether you are opening a new standalone clinic, extending an existing practice, or creating a part-time satellite. Referral mapping with local primary care providers is essential, as is a scan of payer mix and dermatologist density in the region to ensure sustainability.

Employment and Licensing—Confirm state licensure and Drug Enforcement Administration registration and initiate hospital privileges early. These processes can stretch across the entire 90-day window, so starting immediately is critical.

Credentialing and Contracting—Applications with commercial and federal payers, along with Council for Affordable Quality Healthcare updates, often consume weeks if not months. If you plan to perform office microscopy or establish a dermatopathology laboratory, begin the Clinical Laboratory Improvement Amendments certification process in parallel.

Operations—Once the regulatory wheels are in motion, shift to building your practice infrastructure. Secure space, weigh lease vs purchase, and consider partnerships with local hospitals for shared clinic facilities. Recruit staff with dermatology-specific skills such as clinical photography and biopsy assistance. Implement an electronic health record, set up payroll and malpractice insurance, and establish supply chains for everything from liquid nitrogen to surgical trays. Decide whether revenue cycle management will be in-house or outsourced and finalize dermatopathology workflows including courier and transport agreements.

Compensation and Career Sustainability

Compensation in rural dermatology mirrors that of other clinical settings: base salary with productivity bonuses, revenue pooling, or relative value unit structures. Financial planning is crucial. Develop a pro forma that models patient volume, expenses, and realistic growth. Risks exist, including payer mix, staffing, and competition, but the demand for care in underserved areas often offsets these, and communities may support practices with reduced overhead and strong loyalty. Hospital systems may add stipends for supervising advanced practitioners or outreach travel. Loan repayment programs, tax credits, and grants can further enhance packages. Consider checking with the state’s Office of Rural Health.

Career sustainability ultimately depends on more than finances. Geography, amenities, schedule flexibility, autonomy in medical decision-making, work-life balance, the value of being part of and serving a community, and other personal values will shape your “best-fit” practice model. Ask whether you can envision yourself thriving in the community you would be serving.

Broader Efforts and Community

No one builds a rural dermatology practice alone. That is why one of the authors (M.E.L.) created the Rural Access to Dermatology Society (https://www.radsociety.org/), a nonprofit organization connecting dermatologists, residents, and medical students with a shared mission. The organization supports residents through scholarships, mentorship, and telementoring. Faculty can contribute through advocacy, residency track development, and outreach to uniquely underserved rural populations such as Native American reservations where access to dermatology care remains severely limited. Joining can be as simple as attending a webinar, finding a mentor, or volunteering at a free clinic. You do not need to launch your own clinic to get involved; you can begin by connecting with a network already laying the foundation.

Teledermatology and Academic Tracks

Teledermatology and academic initiatives enhance rural care but do not replace in-person practice. Store-and-forward consultations extend reach but cannot match the continuity and trust of long-term patient relationships. Academic rural tracks prepare residents for unique challenges, but someone must staff the clinics. Private and hybrid models remain the backbone of rural access, where dermatologists take on the responsibility and the joy of being the local expert.

Final Thoughts

At its heart, rural dermatology is about trust and presence. Patients will share stories of delayed care, of driving hours for an appointment, of feeling invisible in the health care system. When you choose this path, you are not just filling a workforce gap, you are changing trajectories of lives, families, and communities. The rewards are not easily measured in relative value units or contracts; they show up in the loyalty of patients who return year after year, in the gratitude of families who no longer have to travel to “the big city,” and in the satisfaction of building something bigger than yourself. As Dr. Shaffer noted, he views success primarily in relational terms, reflected in long-term patient trust and continuity of care, particularly when individuals with serious conditions return over many years and entrust him with their ongoing management (email communication, September 5, 2025).

So here’s the invitation: bring one question to your mentor about rural practice and identify one rural site you could visit. The road less traveled in dermatology is closer than you think—and it might just be your path.

Rural dermatology is not as simple as it seems. For some, it means being the only dermatologist in a county where patients drive 3 hours for an appointment; for others, it means practicing in a mid-sized town and serving as both community doctor and regional referral point. Too often, rural dermatology is dismissed as isolating or career limiting, but the truth is very different. Rural dermatologists see plenty of common conditions such as acne and eczema, but they also see complex inflammatory diseases and advanced skin cancers that reflect delays in care for patients living in rural communities in the United States. Careers in rural dermatology can be flexible and creative, ranging from private practice to hospital employment to hybrid models that blend community and academic life.

The myths persist: You will lack colleagues. Your practice will be thin. You must sacrifice academic engagement. In reality, rural practice offers variety, leadership opportunities, and the chance to influence the health of entire communities in profound ways. In this article, we aim to unpack what rural dermatology actually looks like as a potential career path for residents, with a focus on private-academic hybrid and hospital-based practice models.

What Does Rural Really Mean?

Definitions of the term rural vary. For the US Census Bureau, it is synonymous with nonurban, and for the Office of Management and Budget, the term ­nonmetropolitan is preferred. The US Department of Agriculture’s ­Rural-Urban Commuting Area codes recognize a continuum of classifications from micropolitan to remote. In practice, the term rural covers a wide spectrum: the rolling farmlands of the Midwest, the mountains of Montana, the bayous of the South, the Native American reservations in New Mexico, and everything in between. It is not one uniform reality—rural America is diverse, resilient, and deeply connected.

A Day in Rural Practice

Daily clinic flow may look familiar: a full schedule, a mix of new and established patients, and frequent simple procedures such as biopsies and corticosteroid injections. But the scope of practice is wider. You become the dermatologist for hundreds of miles in every direction, managing most conditions locally while referring select cases to subspecialty centers.

Case variety is striking. Neglected tumors, unusual inflammatory presentations, pediatric conditions, and occupational dermatoses/injuries appear alongside the routine. Each day requires flexibility, judgment, confidence, and the ability to think outside the box. You must consider how a patient’s seasonal work, such as ranching or farming, and/or their total commute time impacts the risk-benefit discussion around treatment recommendations.

Matthew P. Shaffer, MD (Salina, Kansas), who has practiced rural dermatology for more than 20 years, explained that the breadth of dermatologic cases in which he served as the expert was both exciting and intimidating, but it became clear that this was the right professional path for him (email communication, September 5, 2025). In small communities, your role extends beyond the clinic walls. You will see patients at the grocery store, the library, and school events. That continuity fosters loyalty and accountability in ways that are hard to quantify.

Hybrid Partnerships and Hospital-Based Practice

Many practice structures exist: independent clinics, multispecialty groups, hospital employment, and increasingly, hybrid partnerships with academic centers.

Academic institutions have recognized the importance of rural exposure, and many now collaborate with rural dermatologists. For example, Heartland Dermatology in Salina, Kansas, where 2 of the authors (B.R.L. and T.G.) practice, partners with St. Louis University in Missouri to provide a residency track and rotations in rural clinics.

Rural-based hospital systems can create similar structures. Monument Health Dermatology in Spearfish, South Dakota, is integrated into the fabric of the community’s larger rural health care model. The physician (M.E.L.) collaborates daily with primary care providers, surgeons, and oncologists through a shared electronic health record (sometimes even through telephone speed-dial given the close collegiality of small-town providers). Patients come from across 4 states, some driving 6 hours each way. Patients who once doubted whether dermatology was worth the trip will consistently return for follow-up care once trust is earned. The stability of hospital employment supports volunteer faculty positions and a free satellite clinic in partnership with a local Lakota Tribal health center. There is never a dull day: the providers see urgent add-ons daily, which keeps them on their toes but in exchange brings immense reward. This includes a recent case from rural Wyoming: a complex mixed infantile hemangioma on the mid face just entering the rapid proliferation phase. Propranolol was started immediately, as opposed to months later when it was too late—a common complication for the majority of rural patients by the time to get to a dermatologist.

The Hub-and-Spoke Model

Complex cases can overwhelm rural practices, and this is when the hub-and-spoke model is invaluable. Dermatologists embed in local communities as spokes, while subspecialty services such as pediatric dermatology, dermatopathology, or Mohs micrographic surgery remain centralized at hubs. The hubs can be but do not have to be academic institutions; for Heartland Dermatology in Kansas, private practices fulfill both hub and spoke roles. With that said, 10 states do not have academic dermatology programs.¹ Mohs surgeons and pediatric dermatologists still can establish robust and successful independent rural subspecialty practices outside academic hubs. Christopher Gasbarre, DO (Spearfish, South Dakota), a board-certified, fellowship-trained Mohs surgeon in rural practice, advises residents to be confident in their abilities and to trust their training, noting that they often will be asked to manage complicated cases because of patient travel and cost constraints; however, clinicians should recognize their own limitations and those of nearby specialists and develop a referral network for cases that require multidisciplinary care (text communication, September 14, 2025).

The hub-and-spoke models—whether they entail an academic center as the hub with private practices as the spokes, or a network of private practices that include rural subspecialists—allows rural dermatologists to remain trusted local experts while ensuring that patients can access advanced care via a more streamlined referral process/network. The challenge is triage: what can be managed locally and what must patients travel for? As Dr. Shaffer explained, decisions about whether care is managed locally or referred to a hub often depend on the experience and comfort level of both the physician and the patient (email communication, September 5, 2025). Ultimately, continuity and trust are central. Patients rely on their local dermatologist to guide these decisions, and that guidance makes the model effective.

Finding the Right Fit

The idea that rural practice means being stuck in a small solo clinic is outdated. Multiple pathways exist, each with strengths and challenges. Independent private practice offers maximum autonomy and deep community integration, though financial and staffing risks are yours to manage. Hospital employment with outreach clinics provides stability, benefits, and collegiality, but bureaucracy can limit innovation and efficiency. Private equity platforms supply resources and rapid growth, but alignment with mission and autonomy must be weighed carefully. Hybrid joint ventures with hospitals combine private control and institutional support, but contracts can be complex. Locum tenens–to-permanent arrangements let you try rural life with minimal commitment, but continuity with patients may be sacrificed. A self-screener can clarify your path: How much autonomy do I want? Do I prefer predictability or variety? How important are procedures, teaching, or community roles? Answer these questions honestly and pair that insight with mentor guidance.

Getting Started: A 90-Day Outline

Launching a rural dermatology clinic is equal parts vision and structure. A focused 90-day plan can make the difference between a smooth opening and early frustration. Think in 4 domains: site selection, employment and licensing, credentialing and contracting, and operations. Even in a compressed timeline, dozens of small but crucial tasks may surface. There are resources—such as the Medical Group Management Association’s practice start-up checklist—that can provide a roadmap, ensuring no detail is overlooked as you transform a vision into a functioning clinic.²

Site Selection—First, determine whether you are opening a new standalone clinic, extending an existing practice, or creating a part-time satellite. Referral mapping with local primary care providers is essential, as is a scan of payer mix and dermatologist density in the region to ensure sustainability.

Employment and Licensing—Confirm state licensure and Drug Enforcement Administration registration and initiate hospital privileges early. These processes can stretch across the entire 90-day window, so starting immediately is critical.

Credentialing and Contracting—Applications with commercial and federal payers, along with Council for Affordable Quality Healthcare updates, often consume weeks if not months. If you plan to perform office microscopy or establish a dermatopathology laboratory, begin the Clinical Laboratory Improvement Amendments certification process in parallel.

Operations—Once the regulatory wheels are in motion, shift to building your practice infrastructure. Secure space, weigh lease vs purchase, and consider partnerships with local hospitals for shared clinic facilities. Recruit staff with dermatology-specific skills such as clinical photography and biopsy assistance. Implement an electronic health record, set up payroll and malpractice insurance, and establish supply chains for everything from liquid nitrogen to surgical trays. Decide whether revenue cycle management will be in-house or outsourced and finalize dermatopathology workflows including courier and transport agreements.

Compensation and Career Sustainability

Compensation in rural dermatology mirrors that of other clinical settings: base salary with productivity bonuses, revenue pooling, or relative value unit structures. Financial planning is crucial. Develop a pro forma that models patient volume, expenses, and realistic growth. Risks exist, including payer mix, staffing, and competition, but the demand for care in underserved areas often offsets these, and communities may support practices with reduced overhead and strong loyalty. Hospital systems may add stipends for supervising advanced practitioners or outreach travel. Loan repayment programs, tax credits, and grants can further enhance packages. Consider checking with the state’s Office of Rural Health.

Career sustainability ultimately depends on more than finances. Geography, amenities, schedule flexibility, autonomy in medical decision-making, work-life balance, the value of being part of and serving a community, and other personal values will shape your “best-fit” practice model. Ask whether you can envision yourself thriving in the community you would be serving.

Broader Efforts and Community

No one builds a rural dermatology practice alone. That is why one of the authors (M.E.L.) created the Rural Access to Dermatology Society (https://www.radsociety.org/), a nonprofit organization connecting dermatologists, residents, and medical students with a shared mission. The organization supports residents through scholarships, mentorship, and telementoring. Faculty can contribute through advocacy, residency track development, and outreach to uniquely underserved rural populations such as Native American reservations where access to dermatology care remains severely limited. Joining can be as simple as attending a webinar, finding a mentor, or volunteering at a free clinic. You do not need to launch your own clinic to get involved; you can begin by connecting with a network already laying the foundation.

Teledermatology and Academic Tracks

Teledermatology and academic initiatives enhance rural care but do not replace in-person practice. Store-and-forward consultations extend reach but cannot match the continuity and trust of long-term patient relationships. Academic rural tracks prepare residents for unique challenges, but someone must staff the clinics. Private and hybrid models remain the backbone of rural access, where dermatologists take on the responsibility and the joy of being the local expert.

Final Thoughts

At its heart, rural dermatology is about trust and presence. Patients will share stories of delayed care, of driving hours for an appointment, of feeling invisible in the health care system. When you choose this path, you are not just filling a workforce gap, you are changing trajectories of lives, families, and communities. The rewards are not easily measured in relative value units or contracts; they show up in the loyalty of patients who return year after year, in the gratitude of families who no longer have to travel to “the big city,” and in the satisfaction of building something bigger than yourself. As Dr. Shaffer noted, he views success primarily in relational terms, reflected in long-term patient trust and continuity of care, particularly when individuals with serious conditions return over many years and entrust him with their ongoing management (email communication, September 5, 2025).

So here’s the invitation: bring one question to your mentor about rural practice and identify one rural site you could visit. The road less traveled in dermatology is closer than you think—and it might just be your path.

The Diagnosis: Fibroelastolytic Papulosis

Histopathology demonstrated decreased density and fragmentation of elastic fibers in the superficial reticular and papillary dermis consistent with an elastolytic disease process (Figure). Of note, elastolysis typically is visualized with Verhoeff-van Gieson stain but cannot be visualized well with standard hematoxylin and eosin staining. Additional staining with Congo red was negative for amyloid, and colloidal iron did not show any increase in dermal mucin, ruling out amyloidosis and scleromyxedema, respectively. Based on the histopathologic findings and the clinical history, a diagnosis of fibroelastolytic papulosis (FP) was made. Given the benign nature of the condition, the patient was prescribed a topical steroid (clobetasol 0.05%) for symptomatic relief. 

Cutaneous conditions can arise from abnormalities in the elastin composition of connective tissue due to abnormal elastin formation or degradation (elastolysis).¹ Fibroelastolytic papulosis is a distinct elastolytic disorder diagnosed histologically by a notable loss of elastic fibers localized to the papillary dermis.² Fibroelastolytic papulosis is an acquired condition linked to exposure to UV radiation, abnormal elastogenesis, and hormonal factors that commonly involves the neck, supraclavicular area, and upper back.^1-3 Predominantly affecting elderly women, FP is characterized by soft white papules that often coalesce into a cobblestonelike plaque.² Because the condition rarely is seen in men, there is speculation that it may involve genetic, hereditary, and hormonal factors that have yet to be identified.¹ 

Fibroelastolytic papulosis can be classified as either pseudoxanthoma elasticum–like papillary dermal elastolysis or white fibrous papulosis.^2,3 White fibrous papulosis manifests with haphazardly arranged collagen fibers in the reticular and deep dermis with papillary dermal elastolysis and most commonly develops on the neck.³ Although our patient’s lesion was on the neck, the absence of thickened collagen bands on histology supported classification as the pseudoxanthoma elasticum– like papillary dermal elastolysis subtype. 

Fibroelastolytic papulosis can be distinguished from other elastic abnormalities by its characteristic clinical appearance, demographic distribution, and associated histopathologic findings. The differential diagnosis of FP includes pseudoxanthoma elasticum (PXE), anetoderma, scleromyxedema, and lichen amyloidosis. 

Pseudoxanthoma elasticum is a hereditary or acquired multisystem disease characterized by fragmentation and calcification of elastic fibers in the mid dermis.^1,4 Its clinical presentation resembles that of FP, appearing as small, asymptomatic, yellowish or flesh-colored papules in a reticular pattern that progressively coalesce into larger plaques with a cobblestonelike appearance.1 Like FP, PXE commonly affects the flexural creases in women but in contrast may manifest earlier (ie, second or third decades of life). Additionally, the pathogenesis of PXE is not related to UV radiation exposure. The hereditary form develops due to a gene variation, whereas the acquired form may be due to conditions associated with physiologic and/or mechanical stress.¹ 

Anetoderma, also known as macular atrophy, is another condition that demonstrates elastic tissue loss in the dermis on histopathology.¹ Anetoderma commonly is seen in younger patients and can be differentiated from FP by the antecedent presence of an inflammatory process. Anetoderma is classified as primary or secondary. Primary anetoderma is associated with prothrombotic abnormalities, while secondary anetoderma is associated with systemic disease including but not limited to sarcoidosis, systemic lupus erythematous, and Graves disease.¹

Neither lichen myxedematosus (LM) nor lichen amyloidosis (LA) are true elastolytic conditions. Lichen myxedematosus is considered in the differential diagnosis of FP due to the associated loss of elastin observed with disease progression. An idiopathic cutaneous mucinosis, LM is a localized form of scleromyxedema, which is characterized by small, firm, waxy papules; mucin deposition in the skin; fibroblast proliferation; and fibrosis. On histologic analysis, typical findings of LM include irregularly arranged fibroblasts, diffuse mucin deposition within the upper and mid reticular dermis, increased collagen deposition, and a decrease in elastin fibers.⁵ 

Lichen amyloidosis is a subtype of primary localized cutaneous amyloidosis, a rare condition characterized by the extracellular deposition of amyloid proteins in the skin and a lack of systemic involvement. Although it is not an elastolytic condition, LA is clinically similar to FP, often manifesting as multiple localized, pruritic, hyperpigmented papules that can coalesce into larger plaques; it tends to develop on the shins, calves, ankles, and thighs.^6,7 The condition commonly manifests in the fifth and sixth decades of life; however, in contrast to FP, LA is more prevalent in men and individuals from Central and South American as well as Middle Eastern and non-Chinese Asian populations.⁸ Lichen amyloidosis is a keratin-derived amyloidosis with cytokeratin-based amyloid precursors that only deposit in the dermis.⁶ Histopathology reveals colloid bodies due to the presence of apoptotic basal keratinocytes. The etiology of LA is unknown, but on rare occasions it has been associated with multiple endocrine neoplasia 2A rearranged during transfection mutations.⁶ 

In summary, FP is an uncommonly diagnosed elastolytic condition that often is asymptomatic or associated with mild pruritus. Biopsy is warranted to help differentiate it from mimicker conditions that may be associated with systemic disease. Currently, there is no established therapy that provides successful treatment. Research suggests unsatisfactory results with the use of topical tretinoin or topical antioxidants.3 More recently, nonablative fractional resurfacing lasers have been evaluated as a possible therapeutic strategy of promise for elastic disorders.⁹

The Diagnosis: Fibroelastolytic Papulosis

Histopathology demonstrated decreased density and fragmentation of elastic fibers in the superficial reticular and papillary dermis consistent with an elastolytic disease process (Figure). Of note, elastolysis typically is visualized with Verhoeff-van Gieson stain but cannot be visualized well with standard hematoxylin and eosin staining. Additional staining with Congo red was negative for amyloid, and colloidal iron did not show any increase in dermal mucin, ruling out amyloidosis and scleromyxedema, respectively. Based on the histopathologic findings and the clinical history, a diagnosis of fibroelastolytic papulosis (FP) was made. Given the benign nature of the condition, the patient was prescribed a topical steroid (clobetasol 0.05%) for symptomatic relief. 

Cutaneous conditions can arise from abnormalities in the elastin composition of connective tissue due to abnormal elastin formation or degradation (elastolysis).¹ Fibroelastolytic papulosis is a distinct elastolytic disorder diagnosed histologically by a notable loss of elastic fibers localized to the papillary dermis.² Fibroelastolytic papulosis is an acquired condition linked to exposure to UV radiation, abnormal elastogenesis, and hormonal factors that commonly involves the neck, supraclavicular area, and upper back.^1-3 Predominantly affecting elderly women, FP is characterized by soft white papules that often coalesce into a cobblestonelike plaque.² Because the condition rarely is seen in men, there is speculation that it may involve genetic, hereditary, and hormonal factors that have yet to be identified.¹ 

Fibroelastolytic papulosis can be classified as either pseudoxanthoma elasticum–like papillary dermal elastolysis or white fibrous papulosis.^2,3 White fibrous papulosis manifests with haphazardly arranged collagen fibers in the reticular and deep dermis with papillary dermal elastolysis and most commonly develops on the neck.³ Although our patient’s lesion was on the neck, the absence of thickened collagen bands on histology supported classification as the pseudoxanthoma elasticum– like papillary dermal elastolysis subtype. 

Fibroelastolytic papulosis can be distinguished from other elastic abnormalities by its characteristic clinical appearance, demographic distribution, and associated histopathologic findings. The differential diagnosis of FP includes pseudoxanthoma elasticum (PXE), anetoderma, scleromyxedema, and lichen amyloidosis. 

Pseudoxanthoma elasticum is a hereditary or acquired multisystem disease characterized by fragmentation and calcification of elastic fibers in the mid dermis.^1,4 Its clinical presentation resembles that of FP, appearing as small, asymptomatic, yellowish or flesh-colored papules in a reticular pattern that progressively coalesce into larger plaques with a cobblestonelike appearance.1 Like FP, PXE commonly affects the flexural creases in women but in contrast may manifest earlier (ie, second or third decades of life). Additionally, the pathogenesis of PXE is not related to UV radiation exposure. The hereditary form develops due to a gene variation, whereas the acquired form may be due to conditions associated with physiologic and/or mechanical stress.¹ 

Anetoderma, also known as macular atrophy, is another condition that demonstrates elastic tissue loss in the dermis on histopathology.¹ Anetoderma commonly is seen in younger patients and can be differentiated from FP by the antecedent presence of an inflammatory process. Anetoderma is classified as primary or secondary. Primary anetoderma is associated with prothrombotic abnormalities, while secondary anetoderma is associated with systemic disease including but not limited to sarcoidosis, systemic lupus erythematous, and Graves disease.¹

Neither lichen myxedematosus (LM) nor lichen amyloidosis (LA) are true elastolytic conditions. Lichen myxedematosus is considered in the differential diagnosis of FP due to the associated loss of elastin observed with disease progression. An idiopathic cutaneous mucinosis, LM is a localized form of scleromyxedema, which is characterized by small, firm, waxy papules; mucin deposition in the skin; fibroblast proliferation; and fibrosis. On histologic analysis, typical findings of LM include irregularly arranged fibroblasts, diffuse mucin deposition within the upper and mid reticular dermis, increased collagen deposition, and a decrease in elastin fibers.⁵ 

Lichen amyloidosis is a subtype of primary localized cutaneous amyloidosis, a rare condition characterized by the extracellular deposition of amyloid proteins in the skin and a lack of systemic involvement. Although it is not an elastolytic condition, LA is clinically similar to FP, often manifesting as multiple localized, pruritic, hyperpigmented papules that can coalesce into larger plaques; it tends to develop on the shins, calves, ankles, and thighs.^6,7 The condition commonly manifests in the fifth and sixth decades of life; however, in contrast to FP, LA is more prevalent in men and individuals from Central and South American as well as Middle Eastern and non-Chinese Asian populations.⁸ Lichen amyloidosis is a keratin-derived amyloidosis with cytokeratin-based amyloid precursors that only deposit in the dermis.⁶ Histopathology reveals colloid bodies due to the presence of apoptotic basal keratinocytes. The etiology of LA is unknown, but on rare occasions it has been associated with multiple endocrine neoplasia 2A rearranged during transfection mutations.⁶ 

In summary, FP is an uncommonly diagnosed elastolytic condition that often is asymptomatic or associated with mild pruritus. Biopsy is warranted to help differentiate it from mimicker conditions that may be associated with systemic disease. Currently, there is no established therapy that provides successful treatment. Research suggests unsatisfactory results with the use of topical tretinoin or topical antioxidants.3 More recently, nonablative fractional resurfacing lasers have been evaluated as a possible therapeutic strategy of promise for elastic disorders.⁹

The Diagnosis: Fibroelastolytic Papulosis

Histopathology demonstrated decreased density and fragmentation of elastic fibers in the superficial reticular and papillary dermis consistent with an elastolytic disease process (Figure). Of note, elastolysis typically is visualized with Verhoeff-van Gieson stain but cannot be visualized well with standard hematoxylin and eosin staining. Additional staining with Congo red was negative for amyloid, and colloidal iron did not show any increase in dermal mucin, ruling out amyloidosis and scleromyxedema, respectively. Based on the histopathologic findings and the clinical history, a diagnosis of fibroelastolytic papulosis (FP) was made. Given the benign nature of the condition, the patient was prescribed a topical steroid (clobetasol 0.05%) for symptomatic relief. 

Cutaneous conditions can arise from abnormalities in the elastin composition of connective tissue due to abnormal elastin formation or degradation (elastolysis).¹ Fibroelastolytic papulosis is a distinct elastolytic disorder diagnosed histologically by a notable loss of elastic fibers localized to the papillary dermis.² Fibroelastolytic papulosis is an acquired condition linked to exposure to UV radiation, abnormal elastogenesis, and hormonal factors that commonly involves the neck, supraclavicular area, and upper back.^1-3 Predominantly affecting elderly women, FP is characterized by soft white papules that often coalesce into a cobblestonelike plaque.² Because the condition rarely is seen in men, there is speculation that it may involve genetic, hereditary, and hormonal factors that have yet to be identified.¹ 

Fibroelastolytic papulosis can be classified as either pseudoxanthoma elasticum–like papillary dermal elastolysis or white fibrous papulosis.^2,3 White fibrous papulosis manifests with haphazardly arranged collagen fibers in the reticular and deep dermis with papillary dermal elastolysis and most commonly develops on the neck.³ Although our patient’s lesion was on the neck, the absence of thickened collagen bands on histology supported classification as the pseudoxanthoma elasticum– like papillary dermal elastolysis subtype. 

Fibroelastolytic papulosis can be distinguished from other elastic abnormalities by its characteristic clinical appearance, demographic distribution, and associated histopathologic findings. The differential diagnosis of FP includes pseudoxanthoma elasticum (PXE), anetoderma, scleromyxedema, and lichen amyloidosis. 

Pseudoxanthoma elasticum is a hereditary or acquired multisystem disease characterized by fragmentation and calcification of elastic fibers in the mid dermis.^1,4 Its clinical presentation resembles that of FP, appearing as small, asymptomatic, yellowish or flesh-colored papules in a reticular pattern that progressively coalesce into larger plaques with a cobblestonelike appearance.1 Like FP, PXE commonly affects the flexural creases in women but in contrast may manifest earlier (ie, second or third decades of life). Additionally, the pathogenesis of PXE is not related to UV radiation exposure. The hereditary form develops due to a gene variation, whereas the acquired form may be due to conditions associated with physiologic and/or mechanical stress.¹ 

Anetoderma, also known as macular atrophy, is another condition that demonstrates elastic tissue loss in the dermis on histopathology.¹ Anetoderma commonly is seen in younger patients and can be differentiated from FP by the antecedent presence of an inflammatory process. Anetoderma is classified as primary or secondary. Primary anetoderma is associated with prothrombotic abnormalities, while secondary anetoderma is associated with systemic disease including but not limited to sarcoidosis, systemic lupus erythematous, and Graves disease.¹

Neither lichen myxedematosus (LM) nor lichen amyloidosis (LA) are true elastolytic conditions. Lichen myxedematosus is considered in the differential diagnosis of FP due to the associated loss of elastin observed with disease progression. An idiopathic cutaneous mucinosis, LM is a localized form of scleromyxedema, which is characterized by small, firm, waxy papules; mucin deposition in the skin; fibroblast proliferation; and fibrosis. On histologic analysis, typical findings of LM include irregularly arranged fibroblasts, diffuse mucin deposition within the upper and mid reticular dermis, increased collagen deposition, and a decrease in elastin fibers.⁵ 

Lichen amyloidosis is a subtype of primary localized cutaneous amyloidosis, a rare condition characterized by the extracellular deposition of amyloid proteins in the skin and a lack of systemic involvement. Although it is not an elastolytic condition, LA is clinically similar to FP, often manifesting as multiple localized, pruritic, hyperpigmented papules that can coalesce into larger plaques; it tends to develop on the shins, calves, ankles, and thighs.^6,7 The condition commonly manifests in the fifth and sixth decades of life; however, in contrast to FP, LA is more prevalent in men and individuals from Central and South American as well as Middle Eastern and non-Chinese Asian populations.⁸ Lichen amyloidosis is a keratin-derived amyloidosis with cytokeratin-based amyloid precursors that only deposit in the dermis.⁶ Histopathology reveals colloid bodies due to the presence of apoptotic basal keratinocytes. The etiology of LA is unknown, but on rare occasions it has been associated with multiple endocrine neoplasia 2A rearranged during transfection mutations.⁶ 

In summary, FP is an uncommonly diagnosed elastolytic condition that often is asymptomatic or associated with mild pruritus. Biopsy is warranted to help differentiate it from mimicker conditions that may be associated with systemic disease. Currently, there is no established therapy that provides successful treatment. Research suggests unsatisfactory results with the use of topical tretinoin or topical antioxidants.3 More recently, nonablative fractional resurfacing lasers have been evaluated as a possible therapeutic strategy of promise for elastic disorders.⁹

Infantile hemangioma (IH) is the most common vascular tumor of infancy, appearing within the first few weeks of life and typically reaching peak size by age 3 to 5 months.¹ It classically manifests as a raised or flat bright-red lesion in the upper dermis of the skin and/or subcutaneous tissue and can vary in number, size, shape, and location.² It is characterized by a rapid proliferative phase, especially between 5 and 8 weeks of age, followed by gradual spontaneous regression over 1 to 10 years.^1-3

Infantile hemangiomas are categorized based on depth (superficial, deep, or mixed) and distribution pattern (focal, multifocal, segmental, or indeterminate).⁴ In most cases, complete regression occurs by age 4 years, but there can be residual telangiectasia, fibrofatty tissue, and/or scarring.^1,4 About 10% to 15% of IHs result in complications that require medical intervention (eg, visual, airway, or auditory compromise; ulceration; disfigurement); ideally, these patients should be referred to a specialist by 5 weeks of age.⁴ Prompt assessment of IH severity is essential to prevent or mitigate potential complications and ultimately improve outcomes.³ Social drivers of health contribute to delayed diagnosis and management of hemangiomas, leading to increased complications in some patient populations.^5-7

Epidemiology

Infantile hemangiomas are estimated to manifest in 4.5% of infants in the United States.¹ The most common type is superficial IH, typically found on the head or neck.⁵ Risk factors in infants include female sex, White race, premature birth, and low birth weight (< 1000 g).^1,3 Maternal risk factors include advanced gestational age (ie, > 35 years), multiple gestations, family history of IH, tobacco use, use of progesterone therapy during pregnancy, and pre-eclampsia.^1,3

Focal IH typically manifests as a single localized lesion that can occur anywhere on the body.^2,3 In contrast, segmental IH manifests in a linear pattern and/or is distributed on a large anatomic area, most commonly on the face and less frequently the extremities and trunk.^2,3 Segmental IHs are more common in Hispanic patients and carry a higher risk for morbidity, often complicated by ulceration that can lead to functional and cosmetic challenges.⁸

Key Clinical Features

Superficial IH in patients with darker skin tones may appear as a dark-red or violaceous papule or plaque compared to bright red in lighter skin tones.⁵ Deep IH may appear as a soft, round, flesh-colored or blue-hued subcutaneous mass, the color of which may be harder to appreciate in those with darker skin tones.⁵

Worth Noting

Complications from IH may require imaging, close follow-up, systemic therapy, multidisciplinary care, and advanced health literacy and patient/family navigation. Multifocal IHs (≥ 5 lesions) are more likely to be associated with infantile hepatic hemangiomas.^2,3 Large (> 5 cm) segmental IHs on the face and lumbosacral area require further evaluation for PHACES (posterior fossa malformation, hemangiomas, arterial anomalies, cardiac defects, eye anomalies, and sternal raphe/cleft defects) and LUMBAR (lower-body segmental IH; urogenital anomalies and ulceration; ­myelopathy; bony deformities; anorectal malformations and arterial anomalies; and renal anomalies) syndromes, which are more common in patients of Hispanic ethnicity.^2,3

The Infantile Hemangioma Referral Score is a recently validated tool that can assist primary care physicians in timely referral of IHs requiring early specialist intervention.^4,9 It takes into account the location, number, and size of the lesions and the age of the patient; these factors help to determine which IHs may be managed conservatively vs those that may require treatment to prevent ­life-threatening complications.^1-3 

Systemic corticosteroids historically have been the primary treatment for IH; however, in the past decade, propranolol oral solution (4.28 mg/mL) has become the first-line therapy for most infants requiring systemic management.¹⁰ It is the only medication approved by the US Food and Drug Administration for proliferating IH, with treatment initiation as young as 5 weeks corrected age.¹¹ As a nonselective beta-blocker, propranolol is believed to reduce IHs through vasoconstriction or by inhibition of angiogenesis.^1,4,10 

For small superficial IHs, treatment options include timolol maleate ophthalmic solution 0.5% (one drop applied twice daily to the IH) or pulsed dye laser therapy.^4,10 Surgical excision typically is avoided during infancy due to concerns about anesthetic risks and potential blood loss.^4,10 Surgery is reserved for cases involving residual fibrofatty tissue, postinvolution scarring, obstruction of vital structures, or lesions in aesthetically sensitive areas as well as when propranolol is contraindicated.^4,10

Health Disparity Highlight

Infants with skin of color and those of lower socioeconomic status (SES) face a heightened risk for delayed diagnosis and more advanced disease at the initial evaluation for IH.^5,7 Access barriers such as geographic limitations to specialty services, lack of insurance, underinsurance, and language differences impact timely diagnosis and treatment.^5,6 Implementation of telemedicine services in areas with limited access to specialists can facilitate early evaluation and risk stratification for IH.¹²

A retrospective cohort study of 804 children seen at a large academic hospital found that those of lower SES were more likely to seek care after 3 months of age than their higher-SES counterparts.⁶ Those who presented after 6 months of age also had higher IH severity scores compared to their counterparts with higher SES.⁶ Delayed access to care may cause children to miss the critical treatment window during the rapid proliferative growth phase.^6,12 However, children insured through Medicaid or the Children’s Health Insurance Program who participated in institutional care management programs (which assist in scheduling specialty care appointments within the institution) sought treatment earlier regardless of their SES, suggesting that such programs may help reduce disparities in timely access for children of lower SES.⁶ 

An epidemiologic study analyzing the demographics of children hospitalized across the United States demonstrated that Black infants with IH were more likely to belong to the lowest income quartile compared with White infants or those of other races. They also were 2 times older on average at initial presentation (1.8 vs 1.0 years), experienced longer hospitalizations (16.4 vs 13.8 days), and underwent more IH-related procedures than White infants and infants of other races (2.4, 1.9, and 2.1, respectively).⁷

These and other factors may contribute to missed windows of opportunity for timely treatment of high-risk IHs in patients with darker skin tones and/or those facing challenges stemming from social drivers of health.

Infantile hemangioma (IH) is the most common vascular tumor of infancy, appearing within the first few weeks of life and typically reaching peak size by age 3 to 5 months.¹ It classically manifests as a raised or flat bright-red lesion in the upper dermis of the skin and/or subcutaneous tissue and can vary in number, size, shape, and location.² It is characterized by a rapid proliferative phase, especially between 5 and 8 weeks of age, followed by gradual spontaneous regression over 1 to 10 years.^1-3

Infantile hemangiomas are categorized based on depth (superficial, deep, or mixed) and distribution pattern (focal, multifocal, segmental, or indeterminate).⁴ In most cases, complete regression occurs by age 4 years, but there can be residual telangiectasia, fibrofatty tissue, and/or scarring.^1,4 About 10% to 15% of IHs result in complications that require medical intervention (eg, visual, airway, or auditory compromise; ulceration; disfigurement); ideally, these patients should be referred to a specialist by 5 weeks of age.⁴ Prompt assessment of IH severity is essential to prevent or mitigate potential complications and ultimately improve outcomes.³ Social drivers of health contribute to delayed diagnosis and management of hemangiomas, leading to increased complications in some patient populations.^5-7

Epidemiology

Infantile hemangiomas are estimated to manifest in 4.5% of infants in the United States.¹ The most common type is superficial IH, typically found on the head or neck.⁵ Risk factors in infants include female sex, White race, premature birth, and low birth weight (< 1000 g).^1,3 Maternal risk factors include advanced gestational age (ie, > 35 years), multiple gestations, family history of IH, tobacco use, use of progesterone therapy during pregnancy, and pre-eclampsia.^1,3

Focal IH typically manifests as a single localized lesion that can occur anywhere on the body.^2,3 In contrast, segmental IH manifests in a linear pattern and/or is distributed on a large anatomic area, most commonly on the face and less frequently the extremities and trunk.^2,3 Segmental IHs are more common in Hispanic patients and carry a higher risk for morbidity, often complicated by ulceration that can lead to functional and cosmetic challenges.⁸

Key Clinical Features

Superficial IH in patients with darker skin tones may appear as a dark-red or violaceous papule or plaque compared to bright red in lighter skin tones.⁵ Deep IH may appear as a soft, round, flesh-colored or blue-hued subcutaneous mass, the color of which may be harder to appreciate in those with darker skin tones.⁵

Worth Noting

Complications from IH may require imaging, close follow-up, systemic therapy, multidisciplinary care, and advanced health literacy and patient/family navigation. Multifocal IHs (≥ 5 lesions) are more likely to be associated with infantile hepatic hemangiomas.^2,3 Large (> 5 cm) segmental IHs on the face and lumbosacral area require further evaluation for PHACES (posterior fossa malformation, hemangiomas, arterial anomalies, cardiac defects, eye anomalies, and sternal raphe/cleft defects) and LUMBAR (lower-body segmental IH; urogenital anomalies and ulceration; ­myelopathy; bony deformities; anorectal malformations and arterial anomalies; and renal anomalies) syndromes, which are more common in patients of Hispanic ethnicity.^2,3

The Infantile Hemangioma Referral Score is a recently validated tool that can assist primary care physicians in timely referral of IHs requiring early specialist intervention.^4,9 It takes into account the location, number, and size of the lesions and the age of the patient; these factors help to determine which IHs may be managed conservatively vs those that may require treatment to prevent ­life-threatening complications.^1-3 

Systemic corticosteroids historically have been the primary treatment for IH; however, in the past decade, propranolol oral solution (4.28 mg/mL) has become the first-line therapy for most infants requiring systemic management.¹⁰ It is the only medication approved by the US Food and Drug Administration for proliferating IH, with treatment initiation as young as 5 weeks corrected age.¹¹ As a nonselective beta-blocker, propranolol is believed to reduce IHs through vasoconstriction or by inhibition of angiogenesis.^1,4,10 

For small superficial IHs, treatment options include timolol maleate ophthalmic solution 0.5% (one drop applied twice daily to the IH) or pulsed dye laser therapy.^4,10 Surgical excision typically is avoided during infancy due to concerns about anesthetic risks and potential blood loss.^4,10 Surgery is reserved for cases involving residual fibrofatty tissue, postinvolution scarring, obstruction of vital structures, or lesions in aesthetically sensitive areas as well as when propranolol is contraindicated.^4,10

Health Disparity Highlight

Infants with skin of color and those of lower socioeconomic status (SES) face a heightened risk for delayed diagnosis and more advanced disease at the initial evaluation for IH.^5,7 Access barriers such as geographic limitations to specialty services, lack of insurance, underinsurance, and language differences impact timely diagnosis and treatment.^5,6 Implementation of telemedicine services in areas with limited access to specialists can facilitate early evaluation and risk stratification for IH.¹²

A retrospective cohort study of 804 children seen at a large academic hospital found that those of lower SES were more likely to seek care after 3 months of age than their higher-SES counterparts.⁶ Those who presented after 6 months of age also had higher IH severity scores compared to their counterparts with higher SES.⁶ Delayed access to care may cause children to miss the critical treatment window during the rapid proliferative growth phase.^6,12 However, children insured through Medicaid or the Children’s Health Insurance Program who participated in institutional care management programs (which assist in scheduling specialty care appointments within the institution) sought treatment earlier regardless of their SES, suggesting that such programs may help reduce disparities in timely access for children of lower SES.⁶ 

An epidemiologic study analyzing the demographics of children hospitalized across the United States demonstrated that Black infants with IH were more likely to belong to the lowest income quartile compared with White infants or those of other races. They also were 2 times older on average at initial presentation (1.8 vs 1.0 years), experienced longer hospitalizations (16.4 vs 13.8 days), and underwent more IH-related procedures than White infants and infants of other races (2.4, 1.9, and 2.1, respectively).⁷

These and other factors may contribute to missed windows of opportunity for timely treatment of high-risk IHs in patients with darker skin tones and/or those facing challenges stemming from social drivers of health.

Infantile hemangioma (IH) is the most common vascular tumor of infancy, appearing within the first few weeks of life and typically reaching peak size by age 3 to 5 months.¹ It classically manifests as a raised or flat bright-red lesion in the upper dermis of the skin and/or subcutaneous tissue and can vary in number, size, shape, and location.² It is characterized by a rapid proliferative phase, especially between 5 and 8 weeks of age, followed by gradual spontaneous regression over 1 to 10 years.^1-3

Infantile hemangiomas are categorized based on depth (superficial, deep, or mixed) and distribution pattern (focal, multifocal, segmental, or indeterminate).⁴ In most cases, complete regression occurs by age 4 years, but there can be residual telangiectasia, fibrofatty tissue, and/or scarring.^1,4 About 10% to 15% of IHs result in complications that require medical intervention (eg, visual, airway, or auditory compromise; ulceration; disfigurement); ideally, these patients should be referred to a specialist by 5 weeks of age.⁴ Prompt assessment of IH severity is essential to prevent or mitigate potential complications and ultimately improve outcomes.³ Social drivers of health contribute to delayed diagnosis and management of hemangiomas, leading to increased complications in some patient populations.^5-7

Epidemiology

Infantile hemangiomas are estimated to manifest in 4.5% of infants in the United States.¹ The most common type is superficial IH, typically found on the head or neck.⁵ Risk factors in infants include female sex, White race, premature birth, and low birth weight (< 1000 g).^1,3 Maternal risk factors include advanced gestational age (ie, > 35 years), multiple gestations, family history of IH, tobacco use, use of progesterone therapy during pregnancy, and pre-eclampsia.^1,3

Focal IH typically manifests as a single localized lesion that can occur anywhere on the body.^2,3 In contrast, segmental IH manifests in a linear pattern and/or is distributed on a large anatomic area, most commonly on the face and less frequently the extremities and trunk.^2,3 Segmental IHs are more common in Hispanic patients and carry a higher risk for morbidity, often complicated by ulceration that can lead to functional and cosmetic challenges.⁸

Key Clinical Features

Superficial IH in patients with darker skin tones may appear as a dark-red or violaceous papule or plaque compared to bright red in lighter skin tones.⁵ Deep IH may appear as a soft, round, flesh-colored or blue-hued subcutaneous mass, the color of which may be harder to appreciate in those with darker skin tones.⁵

Worth Noting

Complications from IH may require imaging, close follow-up, systemic therapy, multidisciplinary care, and advanced health literacy and patient/family navigation. Multifocal IHs (≥ 5 lesions) are more likely to be associated with infantile hepatic hemangiomas.^2,3 Large (> 5 cm) segmental IHs on the face and lumbosacral area require further evaluation for PHACES (posterior fossa malformation, hemangiomas, arterial anomalies, cardiac defects, eye anomalies, and sternal raphe/cleft defects) and LUMBAR (lower-body segmental IH; urogenital anomalies and ulceration; ­myelopathy; bony deformities; anorectal malformations and arterial anomalies; and renal anomalies) syndromes, which are more common in patients of Hispanic ethnicity.^2,3

The Infantile Hemangioma Referral Score is a recently validated tool that can assist primary care physicians in timely referral of IHs requiring early specialist intervention.^4,9 It takes into account the location, number, and size of the lesions and the age of the patient; these factors help to determine which IHs may be managed conservatively vs those that may require treatment to prevent ­life-threatening complications.^1-3 

Systemic corticosteroids historically have been the primary treatment for IH; however, in the past decade, propranolol oral solution (4.28 mg/mL) has become the first-line therapy for most infants requiring systemic management.¹⁰ It is the only medication approved by the US Food and Drug Administration for proliferating IH, with treatment initiation as young as 5 weeks corrected age.¹¹ As a nonselective beta-blocker, propranolol is believed to reduce IHs through vasoconstriction or by inhibition of angiogenesis.^1,4,10 

For small superficial IHs, treatment options include timolol maleate ophthalmic solution 0.5% (one drop applied twice daily to the IH) or pulsed dye laser therapy.^4,10 Surgical excision typically is avoided during infancy due to concerns about anesthetic risks and potential blood loss.^4,10 Surgery is reserved for cases involving residual fibrofatty tissue, postinvolution scarring, obstruction of vital structures, or lesions in aesthetically sensitive areas as well as when propranolol is contraindicated.^4,10

Health Disparity Highlight

Infants with skin of color and those of lower socioeconomic status (SES) face a heightened risk for delayed diagnosis and more advanced disease at the initial evaluation for IH.^5,7 Access barriers such as geographic limitations to specialty services, lack of insurance, underinsurance, and language differences impact timely diagnosis and treatment.^5,6 Implementation of telemedicine services in areas with limited access to specialists can facilitate early evaluation and risk stratification for IH.¹²

A retrospective cohort study of 804 children seen at a large academic hospital found that those of lower SES were more likely to seek care after 3 months of age than their higher-SES counterparts.⁶ Those who presented after 6 months of age also had higher IH severity scores compared to their counterparts with higher SES.⁶ Delayed access to care may cause children to miss the critical treatment window during the rapid proliferative growth phase.^6,12 However, children insured through Medicaid or the Children’s Health Insurance Program who participated in institutional care management programs (which assist in scheduling specialty care appointments within the institution) sought treatment earlier regardless of their SES, suggesting that such programs may help reduce disparities in timely access for children of lower SES.⁶ 

An epidemiologic study analyzing the demographics of children hospitalized across the United States demonstrated that Black infants with IH were more likely to belong to the lowest income quartile compared with White infants or those of other races. They also were 2 times older on average at initial presentation (1.8 vs 1.0 years), experienced longer hospitalizations (16.4 vs 13.8 days), and underwent more IH-related procedures than White infants and infants of other races (2.4, 1.9, and 2.1, respectively).⁷

These and other factors may contribute to missed windows of opportunity for timely treatment of high-risk IHs in patients with darker skin tones and/or those facing challenges stemming from social drivers of health.