In May 2016, FARE announced it had received the Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI) for a two-year project, “Empowering Patient Partners and Key Stakeholders to Develop a Patient-Centric Food Allergy Research Program.” To shape a robust research program informed by patient needs and experiences, .FARE has fostered partnership between patients and other key stakeholders, including members of the FARE Clinical Network. As the world’s largest private source of funding for food allergy research and the leading patient advocacy organization dedicated to food allergy, FARE is uniquely suited to ensure that the patient voice is at the center of the research conversation.
Outcomes Research Advisory Board
The cornerstone of the project is FARE’s Outcomes Research Advisory Board, which has four regional subgroups (Midwest, Northeast Mid-Atlantic, South, and West) and several national advisors. Selected through a conflict-free vetting process, the Advisory Board includes 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. A list of Outcomes Research Advisory Board members may be found here.
Members of the Advisory Board work collectively to help shape food allergy research initiatives. The responsibilities of Advisory Board members are as follows:
- Patient partners provide their unique perspectives on research topics while other stakeholders provide their perspectives on a range of related topics.
- The advisory board and its members help expand appreciation of the serious nature of food allergies, broadly and across multiple constituencies including patients, individual PCPs/clinicians and the broader public.
- The advisory board facilitates dialogue between and among constituents at the regional levels and the national level.
- The advisory board coordinates with the FARE Clinical Network to help ensure that future research and innovative therapies are patient-centric.
- The advisory board fills currently unmet needs in at least two areas: patient and clinical research and clinical trials research.
- Patient and clinical research: the advisory board helps uncover and eliminate barriers to the use of state-of-the-art methods in food allergy diagnosis and management.
- Clinical trials research: the advisory board helps address anecdotal data that suggest a lack of patient involvement in current research efforts.
- The advisory board facilitates in establishing a 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. In the project’s second year, the Advisory Board disseminated and implemented these research priorities through communications including publications in peer-reviewed and non–peer-reviewed journals as well as posters and talks presented at several 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.
Any questions about the PCORI grant or the work of the Outcomes Research Advisory Board can be emailed to Mary Jane Marchisotto at firstname.lastname@example.org or Annette Christensen at email@example.com.
Acknowledgement: This program was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (3017-FARE).
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