Advancing a Cure

PCORI Award

Empowering Patient Partners and Key Stakeholders to Develop a Patient-Centric Food Allergy Research Program


In May 2016, FARE announced it had received the Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI). The information below provides more detail about the program. You can use the links below to navigate this page:

What is the intention of the Patient-Centric Food Allergy Research Program?
What is the Outcomes Research Advisory Board?
Who serves on the Outcomes Research Advisory Board?
What are the responsibilities of the Advisory Board members?
How is the Advisory Board structured?
How frequently does the Advisory Board meet?

What is the intention of the Patient-Centric Food Allergy Research Program?

FARE’s two-year project, “Empowering Patient Partners and Key Stakeholders to Develop a Patient-Centric Food Allergy Research Program,” seeks to address an unmet need in the research field by developing a partnership of patients empowered to work with other key stakeholders, including members of the FARE Clinical Network, to develop a robust patient-centric food allergy research program informed by real-world experiences.

FARE is undertaking this initiative at a critical time in food allergy research. The advisory board will influence the process of selecting and prioritizing research and will have input into potential clinical trial designs and endpoints, thus ensuring that patient-reported outcomes are captured.

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.

What is the Outcomes Research Advisory Board?

The cornerstone of this project is FARE’s new Outcomes Research Advisory Board, which includes four regional subgroups (Midwest, Northeast Mid-Atlantic, South, and West) and several national advisors. FARE has constituted the Outcomes Research Advisory Board to include 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. Working collectively, members of the Advisory Board will help shape food allergy research initiatives by identifying their needs, preferences and priorities for research-based information or evidence.

Who serves on the Outcomes Research Advisory Board?

Through an online application process that closed on June 13, 2016, FARE identified a diverse group of informed and involved patients and other stakeholders. Members of the advisory board were chosen through a conflict-free vetting process. An online call for submissions received self-nominations and nominations submitted by others.

A list of Outcomes Research Advisory Board members may be found here.

What are the responsibilities of the Advisory Board members?

  1. Patient partners will provide their unique perspectives on research topics while other stakeholders will provide their perspectives on a range of related topics.
  2. Over time, the advisory board and its members will play an important role in expanding appreciation of the serious nature of food allergies, broadly and across multiple constituencies including patients, individual PCPs/clinicians and the broader public.
  3. The advisory board will facilitate the dialogue between and among constituents at the regional levels and the national level.
  4. The advisory board will coordinate with the FARE Clinical Network to help ensure that future research and innovative therapies are patient-centric.
  5. The advisory board will fill currently unmet needs at a critical time in food allergy research in at least two areas: patient and clinical research and clinical trials research.
    • Patient and clinical research: the advisory board will help 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 will help address anecdotal data that suggest a lack of patient involvement in current research efforts.
  6. The advisory board will facilitate 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.

How is the Outcomes Research Advisory Board structured?

Each of the regional subgroups will bring together food allergy stakeholders within its geographical area, while the national advisory board will bring together the four regional subgroups and the national advisors. FARE will outline the roles and responsibilities of advisory board members, who may participate as engagement advisors, engagement participants or engagement partners. Engagement methods will include in-person and online meetings, focus groups, webinars, teleconferences, interviews, surveys, emails and phone calls.

How frequently does the Outcomes Research Advisory Board meet?

Each of the four regional subgroups will meet in-person on a quarterly basis. The national board will meet at least once a year in person. A FARE Regional Community Engagement staff member will work with each regional subgroup on setting agenda, will participate in all regional calls and meetings and will work closely with members of FARE’s leadership team at each meeting. Monthly calls will ensure progress in interim months.

The first in-person meetings of the advisory board’s regional subgroups will be held in August 2016 and September 2016. The first in-person meeting of the national advisory board will coincide with FARE’s annual research retreat in Washington, D.C. during the weekend of March 31–April 1, 2017.

If you have any questions, please email
Mary Jane Marchisotto at mjmarchisotto@foodallergy.org or
Annette Christensen at achristensen@foodallergy.org.

Acknowledgement. This program was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (3017-FARE).