Abstract
Background:
Diabetic foot ulcers (DFUs) remain one of the most devastating complications of diabetes, accounting for over 80% of nontraumatic amputations and contributing to a 5-year mortality rate exceeding 30%. Despite significant clinical advances, profound disparities persist. Racial and ethnic minoritized populations, rural communities, and people with low socioeconomic resources experience disproportionate rates of severe ulceration, infection, delayed healing, and amputation.
Problem:
Traditional research approaches, often developed in academic settings without community input, have insufficiently addressed the contextual, cultural, and structural factors shaping DFU risk and outcomes.
Approach:
Community-engaged research (CEnR) offers a promising pathway to address these inequities; yet, DFU-specific evidence remains limited and heterogeneous. In response, the Diabetic Foot Consortium (DFC), a national research network funded by the National Institute of Diabetes and Digestive and Kidney Diseases, has initiated multisite efforts to embed community advisory boards, faith-based partnerships, mobile outreach, and culturally aligned engagement into DFU research.
Model:
We propose the DFC-CEnR Model, a conceptual framework for integrating community-engaged approaches to DFU prevention, early detection, treatment, and research participation. The model distinguishes CEnR from related approaches (community-based participatory research, patient and public involvement, cultural humility, and equity-focused system interventions), outlining hypothesized mechanisms and evaluation domains. Illustrative consortium examples demonstrate how engagement domains may be operationalized and inform future testing of validated outcome measures.
Implications:
This article positions community engagement as a hypothesis-generating strategy that requires rigorous empirical testing to determine its impact on DFU outcomes and disparities.
Keywords
INTRODUCTION
Diabetic foot ulcers (DFUs) are a leading cause of nontraumatic lower extremity amputations, accounting for the majority of amputations among people with diabetes. 1 Globally, an estimated 18.6 million individuals experience a DFU each year, including 1.6 million in the United States. DFUs precede most amputations and are associated with a 5-year mortality rate exceeding 30%, rising to more than 70% after major amputation. 1
Wagahta Semere, MD, MHS
Disparities in DFU incidence and outcomes are stark, with Black, Hispanic, Native American, Alaska Native, and Pacific Islander populations experiencing significantly higher rates of amputations and poorer access to limb preservation services. 2 Rural communities face geographical and structural barriers to specialty care, whereas low-income individuals encounter financial barriers, competing demands, transportation burdens, and fragmented access to preventive foot care. Language discordance and medical mistrust further contribute to delayed presentation and reduced adherence. 2
Although community-engaged research (CEnR) has improved outcomes in broader chronic disease contexts, including diabetes self-management and hypertension, its integration into DFU research remains limited. Traditional research approaches often position communities as passive participants rather than as collaborative partners, restricting cultural relevance and translation into real-world care environments. 2
Community engagement strategies across Diabetic Foot Consortium (DFC) sites. Summary of community engagement efforts implemented at each DFC site to support inclusive research design and care delivery.
The Diabetic Foot Consortium (DFC), a national research network funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), has begun incorporating community engagement strategies across multiple sites (see Figure 1). These efforts include advisory councils, faith-based partnerships, tribal collaborations, and community-based outreach initiatives designed to improve awareness, early detection, and research participation.
To guide these efforts, we propose the DFC-CEnR Model, a conceptual framework that integrates community engagement into DFU research and care. The model outlines engagement domains, hypothesized mechanisms of action, staged implementation processes, and preliminary evaluation metrics. Importantly, the framework is hypothesis-generating rather than outcome-validating and is intended to guide future empirical investigation.
CONCEPTUAL FOUNDATIONS
CEnR exists along a continuum of partnership intensity. At the one end of this spectrum, community consultation may involve limited feedback from community representatives regarding study design or outreach strategies. 3 At the other end, community-based participatory research (CBPR) emphasizes shared governance and collaborative decision-making across all phases of research. 4
Related approaches, including patient and public involvement (PPI), emphasize the integration of patient perspectives into research design, implementation, and dissemination. 5 Cultural humility further informs respectful engagement with diverse communities by encouraging reflexivity and recognition of power dynamics between health institutions and the populations they serve. 6 The DFC–CEnR Model integrates these related but distinct approaches while focusing specifically on how structured community partnership can be incorporated into DFU research methodology.
The DFC-CEnR Model
The proposed model consists of four interrelated components:
Core Engagement Domains Mechanisms of Action Implementation Stages Evaluation Metrics and Success Indicators
Together, these elements provide a structured approach for integrating community engagement into DFU research programs.
CORE ENGAGEMENT DOMAINS
Trust and relationship building
Sustained presence in community spaces and transparent communication may strengthen early clinical presentation and research participation, particularly in historically minoritized groups. 7
Bidirectional communication and information sharing
Effective community engagement requires ongoing dialogue rather than one-directional dissemination. Bidirectional communication enables researchers to understand community knowledge, misconceptions, and priorities while also sharing information about DFU risks, treatment, and available research opportunities. Means of communication include listening sessions, community conversations, surveys, and small-group discussions. 5
Cultural and linguistic alignment
Educational materials and communication approaches are adapted to reflect linguistic preferences, cultural beliefs, and community context. 6
Shared prioritization and co-design
Shared prioritization ensures that research questions, recruitment strategies, intervention design, and dissemination plans reflect the needs and preferences of communities most affected by DFU disparities. Co-design activities, such as developing educational materials or refining research protocols with patient or community advisors, reflect PPI principles while promoting greater acceptability and feasibility of interventions. 2
Resource and power redistribution
Equitable community engagement requires acknowledging and redressing power imbalances between academic institutions and communities. This includes compensating community partners for their expertise, supporting community-led initiatives, offering training opportunities, and sharing decision-making authority. 4 Such strategies strengthen partnership sustainability and foster shared ownership of research outcomes.
Hypothesized mechanisms of action
The DFC-CEnR Model proposes several pathways through which community engagement may influence DFU outcomes:
Increased early detection
Community-based outreach and education may improve recognition of neuropathy and early ulceration, facilitating timely referral. 1
Enhanced care adherence
Trust and culturally aligned communication may improve adherence to off-loading, wound care, antibiotics, and follow-up. 8
Reduced delays in presentation
Trusted messengers and community-based platforms may mitigate mistrust and misconceptions contributing to delayed care. 2
Improved research participation
Community-aligned recruitment and advisory structures may enhance enrollment diversity and retention. 9
Strengthened relevance and sustainability
Co-created interventions may better address contextual barriers and improve long-term feasibility. 4
Implementation stages
Stage 1—Relationship building
Establish trust and mutual understanding by attending community meetings, identifying local priorities, and building relationships with community leaders and organizations. 7
Stage 2—Information exchange
Gather insights about community experiences, knowledge gaps, perceptions of DFUs, and barriers to care via listening sessions and surveys. 5
Stage 3—Co-design of research and interventions
Incorporate community insights into recruitment materials, consent processes, and intervention design. 4
Stage 4—Community-aligned implementation
Deliver research and educational activities in culturally relevant settings. 8
Stage 5—Cyclical evaluation
Review engagement metrics and outcomes with community partners to support iterative improvement. 4
EVALUATION METRICS AND SUCCESS INDICATORS
Given the current absence of empirical evidence demonstrating that CEnR improves DFU outcomes, the DFC-CEnR Model incorporates a set of preliminary evaluation metrics intended to guide future investigation. As evidence in DFU-focused engagement remains in the early stages of development, the metrics described below should be interpreted as preliminary, hypothesis-driven indicators that will require validation through rigorous future study.10–14
Engagement metrics
Number and diversity of engagement activities; level of partnership along a continuum from consultation to shared governance. 4
Access and timeliness metrics
Time from ulcer onset to presentation; interval from referral to specialty evaluation; adherence to off-loading and wound care. 8
Research participation metrics
Enrollment diversity across race, ethnicity, geography, and socioeconomic status; retention rates; participant-reported satisfaction. 9
Trust and communication metrics
Validated trust scales; cultural responsiveness ratings; language accessibility assessments. 7
Long-term clinical endpoints
Wound healing rates, amputation incidence, ulcer recurrence, and disparity reduction across population groups. 1
These metrics are hypothesis-driven and require prospective validation.
Application across DFC sites
From 2024 to 2025, DFC outreach and engagement activities at University of Pittsburgh and partner community sites included approximately 7–8 events (e.g., neighborhood advisory council/community conversations in Homewood; multiple events with Bethany Baptist Church; a McKees Rocks church event; and a rural community event in Altoona). Collectively, these engagements reached an estimated 150–200 individuals. Attendance documentation varied by event; sign-in sheets were used in some settings, but not consistently; therefore, counts are best interpreted as approximate. Participants at Pittsburgh-area events were predominantly Black/African American (estimated ∼90%); the Altoona event primarily engaged White participants from a rural community context. These figures describe engagement reach and setting characteristics and are not intended as outcome metrics.
Community conversations conducted in Pittsburgh’s Homewood neighborhood illustrate early implementation of Stages 1 and 2 of the DFC-CEnR Model. These sessions revealed substantial gaps in awareness regarding DFU risks, treatment options, and the existence of local specialty clinics, underscoring the need for improved bidirectional communication. Participants also expressed concerns shaped by historical medical exploitation and ongoing experiences with health system bias, factors directly tied to the model’s domains of trust building and cultural alignment.
At the University of Arizona, engagement with tribal elders and leaders within the Indian Health Service reflects deep community relationship building aligned with the DFC-CEnR framework. Efforts to co-design outreach strategies, respect cultural governance structures, and prioritize Indigenous knowledge sources exemplify the model’s domains of cultural alignment and shared prioritization. Site-specific DFU populations differ; 2025 electronic health record-reported DFU patient demographics indicated a predominantly White DFU population with meaningful representation of American Indian/Alaska Native and Black/African American patients and an ethnicity distribution that is approximately 30% Hispanic. These descriptive figures contextualize recruitment priorities and do not represent comparative outcomes.
At the University of California San Francisco (UCSF), patient and caregiver advisory boards offer structured mechanisms for integrating patient expertise into research design, consistent with Stage 3 (Co-Design) of the DFC-CEnR Model. These advisory structures allow community members to refine study protocols, advise on communication materials, and identify contextual barriers that may influence recruitment, retention, or adherence. Such co-design processes align with both CBPR and PPI principles, as they elevate patient and caregiver insights to shape research in ways that improve cultural relevance and practical feasibility.
At the University of Michigan, the implementation of community surveys demonstrates the application of Stage 2 (Information Exchange and Needs Assessment). These surveys capture local perspectives on DFU risk factors, access barriers, and attitudes toward participating in research. Insights gained through this process inform the tailoring of outreach activities, educational content, and recruitment strategies, ensuring alignment with community-defined needs.
Integrating engagement activities with evidence-based DFU care
Community engagement is not a substitute for evidence-based DFU management but may enhance access, adherence, and prevention when integrated with established clinical standards. Community health workers, mobile clinics, and telemedicine platforms may extend specialty care to individuals facing geographic and financial barriers. Culturally aligned education and communication strategies can improve the feasibility of off-loading, wound care adherence, and follow-up. Community-based screening initiatives conducted through trusted institutions may support earlier detection while reinforcing glycemic management and foot surveillance. These examples illustrate how engagement strategies can complement, rather than replace, clinical best practices within DFU care.
FUTURE DIRECTIONS
Future studies should rigorously evaluate whether community engagement influences early detection, adherence, amputation rates, and disparity reduction using mixed-methods designs, pragmatic trials, and longitudinal cohorts. Economic evaluation and scalability across rural community hospital settings warrant investigation. Sustainability requires integration with health system workflows, workforce investment, and shared governance models. Digital tools such as telemedicine and mobile health may enhance monitoring and communication but require empirical testing within community-based frameworks.
Conclusion
Reducing disparities in DFU outcomes will require more than incremental technical advances in wound care; it will require reexamining how research priorities are set, how interventions are designed, and whose voices shape implementation. The DFC-CEnR Model does not assert that community engagement alone will improve wound healing or reduce amputation. Rather, it offers a structured, testable framework linking engagement processes to measurable clinical, patient-centered, and equity-focused outcomes.
The examples described across DFC sites demonstrate that community partnership in DFU research is feasible and adaptable across diverse settings. However, feasibility should not be conflated with effectiveness. Rigorous prospective evaluation, including comparative designs, economic analyses, and long-term clinical endpoints, will be necessary to determine whether community-engaged strategies meaningfully influence DFU outcomes.
If proven effective, community-engaged approaches could reshape how DFU research and care are delivered, shifting from models that study communities to models built with them. Until then, the DFC-CEnR Model stands as a research agenda—a call for disciplined, evidence-driven testing of community stakeholder engagement as a mechanism for advancing equity in wound care.
Footnotes
ACKNOWLEDGMENTS AND FUNDING SOURCES
The authors extend their deep gratitude to all participants for generously contributing their time to DFC studies. They thank the NIDDK Project Officers, Henry Burch, MD; Teresa LZ Jones, MD; and Yan Li, PhD, for study guidance, as well as all investigators, coordinators, and data coordinating staff listed in the 
. This study is conducted by the National Institutes of Health-sponsored DFC supported through Grant IDs U01DK119100, U01DK119083, U01DK119094, U01DK119099, and U24DK122927 of the NIDDK. Wagahta Semere, MD, MHS is supported by an Agency for Healthcare Research and Quality award (K08HS27844).
AUTHOR DISCLOSURE AND GHOSTWRITING
The authors report no proprietary or commercial interest in any product mentioned or concept discussed in this article. The content of this article was expressly written by the authors, and no ghostwriters were used.
ABOUT THE AUTHORS
Diabetic Foot Ulcers (DFUs) disproportionately affect individuals facing structural barriers related to socioeconomic position, geography, disability, and access to care. Traditional research approaches are insufficient to address the contextual, cultural, and structural factors shaping DFU risk and outcomes. Community-engaged research offers a powerful and promising tool, bringing community members and researchers together to share in the research process to address poor outcomes in DFUs.
Supplemental Material
Abbreviations and Acronyms
References
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