Background: Food allergy (FA) affects 15 million people in the United States including 1 in 13 children and has increased 50 percent between 1997 and 2011. The societal and public health impact of FA is underestimated. The current protocol is strict avoidance and carrying epinephrine to administer in case of a severe reaction, followed by transport to the ER.
Proposed Solution: The cornerstone of FARE’s Engagement Award is the development of the Outcomes Research Advisory Board (ORAB). By empowering individuals reflecting diverse perspectives on food allergy issues, the ORAB will ensure the development of a patient-centric FA research program.
Objectives: The multidisciplinary and diverse ORAB will actively shape food allergy research by identifying their respective information or evidence needs, preferences, and priorities. It will employ a standardized methodology to develop research partnerships initially at the regional level. Ultimately, the initiative will ensure that FARE’s long-term research agenda of understanding the causes and treatments for food allergy improves the quality of life of FA individuals.
Activities: FARE will recruit a diverse group of individuals to develop research ideas and questions related to FA diagnosis, management strategies, therapeutic options, and disparities in FA care. The ORAB will be national but organized as four regional sub-groups, each with representatives of patient partners, clinical researchers, and other stakeholder groups. It will meet quarterly. Each subgroup will meet in person quarterly and elect a secretary who will make reports to the full ORAB on monthly calls. FARE community engagement staff will assist regional boards and FARE leadership will facilitate meetings. FARE may schedule surveys and/or focus groups.
Engagement Plan: The ORAB will include 40 regional and 4 national representatives. FARE will outline the roles and responsibilities of members. Engagement methods will include in-person and online meetings, focus groups, webinars, and teleconferences.
Outcomes: Project outcomes include an ORAB of informed and involved patients and other stakeholders who will actively shape FA research initiatives. The ORAB will influence the process of selecting and prioritizing research, selecting potential clinical trial designs, defining endpoints, and ensuring value-ordered patient-reported outcomes, thereby improving design and implementation based on patient and stakeholder input. The ORAB will play an important role in expanding the appreciation of the serious nature of FA broadly and help facilitate the rapid adoption of identified best practices for clinical practice based on clinical research designed to reduce disparities in FA care and clinical trials that evaluate the safety and effectiveness of new approaches to food allergy diagnosis, management, and treatment.
Project Collaborators: Applicants are pending. FARE’s Medical Advisory Board and Dr. Ruchi Gupta (Lurie Children’s) will advise the project.