Project Summary

Past studies have used asthma patient and family member (P/FM) involvement in the creation and execution of a research protocol. To bring in the P/FM voice requires the time-consuming work of establishing trust with them and conveying the benefits of participation. Researchers need convincing of the importance of collaboration with P/FMs, as well as guidance on finding a useful role for them that leads to a stronger trial. Disease advocacy organizations have trusting relationships with P/FMs, which can facilitate these collaborations. There has been no attempt to create a systematic model for P/FM and researcher collaboration on asthma and allergic disease PCOR/CER.

The project team proposes to use AAFA’s patient and family advisory council (PFAC) structure to scale its ability to connect researchers with P/FM collaborators for PCOR/CER.

The long-term goal for BASIC is to scale a system for increasing the number of PCOR/CER asthma and allergy studies by fostering productive collaborations between P/FMs and researchers.

Aim 1: Expand the number of asthma researchers who value the P/FM voice and prepare them to be effective collaborators with P/FM.
Aim 2: Increase the number of P/FMs interested in research and train them for substantive advisor roles. Special efforts will be made to ensure representation from populations that experience health disparities.
Aim 3: Build a system (BASIC) for managing engagements and connecting researchers and P/FM advisors to enable and support increasing numbers of PCOR/CER studies. Make clinical researchers aware of the BASIC model and promote its use on asthma, allergy, and in other disease-area studies.

  • Form an advisory panel consisting of researchers and P/FMs
  • Recruit a pool of P/FMs from which to draw for PCOR/CER studies; recruit patients to match the particular needs of any given study; maintain and deepen P/FM engagement
  • Engage with researchers who have an interest in using P/FM advisors
  • Assist them to effectively involve patients in PCOR/CER studies
  • Make other disease advocacy organizations aware of BASIC model and its value


  • Increase number of P/FMs who ask to be a research advisor, an indication of increased P/FM interest in research
  • Increase number of P/FMs who serve as an advisor to clinical research; increase P/FM involvement in PCOR/CER; and demonstrate efficacy/value of the BASIC model
  • Increase number of researchers who express interest in learning more about BASIC; demonstrate value of the BASIC model
  • Increase number of studies that request a PFAC through BASIC; demonstrate efficacy and value of BASIC model
  • Increase the number of disease advocacy organizations that are aware of the BASIC model; BASIC will be used to increase P/FM involvement in PCOR/CER
  • The project team will invite P/FMs to participate in online communities and interest groups through social media, promotion of digital properties, and community-based organizations. Continuous engagement will be maintained by online training, participation in forum discussions, surveys, newsletters, and incentives.
  • The team will recruit researchers through its medical-scientific council, professional associations, and conferences as well as relationships with industry and pharmaceutical researchers
  • AAFA’s chapters will provide BASIC with a ready-made entrée to P/FMs who may not be well represented in the team’s online communities, such as racial and ethnic minorities, persons who are on Medicaid, uninsured people, or rural populations. 

Project Information

Kenneth Mendez, MBA
Asthma and Allergy Foundation of America

Key Dates

24 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: November 10, 2022