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.