In May 2016, FARE received “Empowering Patient Partners and Key Stakeholders to Develop a Patient-Centric Food Allergy Research Program, ” a two-year award from the Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI), to support a robust research program informed by patient needs and experiences. The cornerstone of the two-year project was FARE’s Outcomes Research Advisory Board, created to foster partnerships between patients and other key stakeholders, including members of the FARE Clinical Network, to empower patients to inform and influence the research landscape.
The Outcomes Research Advisory Board had four regional subgroups (Midwest, Northeast Mid-Atlantic, South, and West) and several national advisors. Selected through a conflict-free vetting process, the advisory board included patient representatives (parents of children with food allergies or adults with food allergies), researchers, and other stakeholders such as nurses, educators, advocates, health plan payers and pharmacy benefit managers.
Dedicating more than 2,500 volunteer hours over the course of two years, members of the advisory board worked collectively to help shape food allergy research initiatives:
- Patient partners provided their unique perspectives on research topics while other stakeholders provide their perspectives on a range of related topics.
- The advisory board and its members helped expand appreciation of the serious nature of food allergies, broadly and across multiple constituencies including patients, individual primary care physicians/clinicians and the broader public.
- The advisory board facilitated dialogue between and among constituents at the regional levels and the national level.
- The advisory board coordinated with the FARE Clinical Network to help ensure that future research and innovative therapies are patient-centered.
- The advisory board filled unmet needs in patient and clinical research and clinical trials research. In patient and clinical research, the advisory board helped uncover and eliminate barriers to the use of state-of-the-art methods in food allergy diagnosis and management. In clinical trials research, the advisory board helped address anecdotal data that suggest a lack of patient involvement in current research efforts.
- The advisory board facilitated the establishment of dialogue between food allergy patient representatives and other key stakeholders to help all stakeholder groups understand each other’s values, perspectives and needs for research-based information or evidence.
During the first year of the project, the advisory board identified patient needs, preferences and priorities for research-based information and evidence. These findings were presented during the Fifth Annual FARE Research Retreat, held March 31-April 1, 2017, in Washington, D.C. Priorities identified by the advisory board included:
- more accurate diagnostic methods, including methods that can help predict disease progression and the risk of severe reactions
- new therapies to protect against the most severe symptoms
- labeling practices that make it easier to avoid allergens without excluding safe foods
- improvements in epinephrine, including non-injectable forms of the drug
- support systems that address quality-of-life issues like stress, anxiety and bullying
In the project’s second year, the advisory board shared and acted on these research priorities through publications in peer-reviewed and non-peer-reviewed journals as well as posters and talks presented at national and international scientific conferences. Shortly before the conclusion of the two-year PCORI grant, representatives from the Advisory Board gave a presentation on the psychological and social impacts of food allergy at the Sixth Annual FARE Research Retreat, held April 13-14, 2018.
Though completed in 2018, the PCORI grant continues to impact FARE’s mission. On April 13, 2019, at the Seventh Annual FARE Research Retreat, past members of FARE’s Outcomes Research Advisory Board laid out four ambitious goals: (1) developing a food allergy training program for mental health professionals, (2) carrying out a national assessment of patient’s beliefs and goals relating to food allergy, (3) designing a decision tool to assist individual patients and health care providers in charting their course of food allergy treatment, and (4) creating accurate and comprehensive measures of treatment outcomes from the patient’s perspective. Work to accomplish these goals remains ongoing.
Acknowledgement: This program was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (3017-FARE).