Background: Food allergy is a potentially life-threatening disease affecting 32 million Americans. Blacks and Latinos experience food allergy at a higher rate than whites but are less likely to have access to testing, care, and safe foods. Clinical research is key to developing new treatments, prevention strategies, and cures, yet Blacks and Latinos are underrepresented in clinical trials. Increasing diversity in, and access to, research is vital to improving patient outcomes for people of color.
Through its Community Access Program on Patient-Centered Outcomes Research (CAP on PCOR), FARE will partner with Black, Latino, and low-income individuals with food allergy and researchers in Washington, DC, to build trust and understand the needs and barriers of patients and caregivers in Wards 7 and 8. The project team will increase awareness of and engagement in the food allergy PCOR and comparative effectiveness research (CER) process. A CAP on PCOR Advisory Council of community members impacted by food allergy and local stakeholders will conduct outreach and co-develop PCOR/CER training and resources for the community. CAP on PCOR will leverage networks of data, research/medical institutions, and community, state, and national partnerships to improve food allergy health equity and outcomes.
Proposed Solution to the Problem: The proposed solution in Washington, DC is to leverage the existing FARE Community Access Program (CAP), taking it a step further to not only understand barriers to quality food allergy care, but barriers to participation in PCOR/CER. The team’s new effort, titled CAP on PCOR, will partner with community-based organizations, faith-based leaders, community members, and clinical research institutions in Washington, DC, to engage Black food allergy patients and families living in Wards 7 and 8. The team aims to understand the unmet needs in food allergy research and ways to build capacity in the community for Black-led and Black-supported PCOR/CER efforts.
The CAP on PCOR will utilize the team’s data network, which includes the FARE Patient Registry with more than 12,000 members, for recruitment and retention of Black patients interested in being part of PCOR teams. The team will also leverage its infrastructure for training, education, and support, and our local partnerships to build a sustainable model for patient-centered outcomes research in the low-income Black neighborhoods of Wards 7 and 8. The team will develop a model for PCOR/CER that holistically addresses four social determinants of health barriers that impede patient and caregiver engagement in PCOR/CER.
Objectives: The primary objective of CAP on PCOR is to increase the capacity of Black food allergy patients from low-income, systematically disenfranchised areas like Wards 7 and 8 in Washington, DC to understand and to participate in PCOR/CER by: developing a collaborative and culturally informed local PCOR/CER research agenda in the food allergy space; promoting opportunities to learn about and engage in PCOR/CER through trusted community-based sources; and creating safe and culturally competent events and spaces (physical and virtual) that engage the community in PCOR/CER.
Activities: Using the principles of social determinants of health-based systemic change, the team will strategically conduct the following activities to meet our primary objective: establish community partnerships; recruit for the CAP on PCOR Advisory Council; employ qualitative and quantitative assessment; build curriculum for patient engagement in PCOR/CER for food allergy; develop a Black-led food allergy support group; and establish procedures for event planning in PCOR/CER activities.
Projected Outcomes and Outputs:
By tackling the aims and activities above, the team will have the following intended outcomes and outputs in the short term during the project period:
- A ready-to-go, empowered Advisory Council for local PCOR/CER efforts that looks like the community most impacted by food allergy
- Citizen-scientist training that can support the sustainability of the Advisory Council and increase awareness of food allergy research among community members
- A Black-led local support group and medical advisor that can help with the social and emotional support needed to engage in PCOR/CER
- Agenda for a hyper-local, majority Black-developed food allergy PCOR/CER research agenda
- A plan for safe and inclusive food allergy PCOR/CER efforts
- Dissemination of the project results to the community, by the community
Intended outcomes in the medium term after the project period:
- Enhanced infrastructure for the Advisory Council.
- Increased engagement in the team’s PCOR/CER work by Black Washington, DC, residents
- Growth in the number of hyper-local, Black-led support groups regionally
- Engagement with funders to host a local, culturally mindful, and allergy-friendly PCOR/CER meeting
Intended outcomes in the long term after the project period:
Engagement with national partners and funders to support an expanded and sustainable CAP on PCOR model across the 50-site FARE Clinical Network.
Patient and Stakeholder Engagement Plan: Members of the Advisory Council will include parents and caregivers of children with food allergy, individuals with food allergy, medical/human service professionals, and community and faith-based partners. Organizational Advisory Council members will play a key role in identifying and recruiting patient and caregiver stakeholders for the Advisory Council, surveys, focus groups, and PCOR/CER trainings.
The Advisory Council will convene at least quarterly to develop hypotheses, refine the work plan, and set measurable deliverables to:(a) assess the knowledge and barriers to food allergy research participation; and (b) increase general understanding of research and increase participation. The council will develop the plan from the findings gathered via a survey that will: (a) assess community needs, determining prevalence of food allergy and barriers to care and education; and (b) gather perceptions of and assess baseline understanding of food allergy research knowledge and participation, including identifying hurdles to basic understanding and involvement.
The team believes in the “nothing about us, without us” mentality for true engagement in PCOR/CER and for long-term impact. Thus, the Advisory Council will play a key role in not only the development of research questions and the assessment of findings, but also the implementation and dissemination back to the community and beyond. Specific opportunities for patient- and caregiver-led implementation and dissemination that fosters engagement:
- Patients/caregivers as the support systems–The team will build opportunities for the Black food allergy community in Wards 7 and 8 to provide the social and emotional support that it takes to engage in PCOR/CER while offering resources co-developed with Black community leaders as a means for empowerment.
- Patients/caregivers as trusted voices–The team will also provide its Advisory Council members with opportunities to present on webinars for the community and beyond to speak to the community about findings. The team will co-develop resources to ensure Advisory Council members feel comfortable with their presentations.
- Patients/caregivers as community liaisons–The Team will leverage its Advisory Council to support recruitment at every stage of the project to increase buy-in.
Council members will also review materials and surveys, advise on cultural and community appropriateness, provide project feedback, and assist with educating the public about the programs and resources. Council members will be recommended and/or recruited by partners in the community. Council members will be surveyed throughout the program to gauge their satisfaction and gather feedback on the program.
FARE will work with community partners, and their networks as applicable, to provide training, webinars, printed materials, and other educational offerings for food allergic patients, caregivers, and other stakeholders in the medical and human service fields. Follow-up surveys will be distributed after programming and events to gather feedback. Partners will be involved in the dissemination of community findings as reported.
Project Collaborators: CAP on PCOR project collaborators include the CAP Advisory Council of community stakeholders (food allergy patients, faith-based leaders, caregivers, healthcare providers, and local organizational leaders), the Children’s National Medical Center and THEARC, Catalyst Missions Group, Health Alliance Network, and AllergyStrong.