Patient and Family Advisors (PFA). Patient and family advisors are uniquely qualified to serve as research partners as they have experience sharing their insights and collaborating with health care professionals in improvement and change. The most important role of PFAs is to share their perspectives based on their experiences in health care and as advisors interacting with other patients and families. Their primary responsibilities include:
- Selecting research projects that they want to collaborate on.
- Participating in orientation needed to participate fully on a research project and identifying any specific learning needs that they may have.
- Sharing their perspectives, experiences, feedback, and ideas with researchers.
- Helping researchers understand the priorities and views of patients and families.
- Assisting researchers in connecting with the patient population that is being studied.
- Assisting with the development and implementation of the research project’s dissemination plan.
- Communicating the relevance of research findings to other patients, families, and the community.
Staff Liaisons. Staff Liaisons have an essential role in research partnerships as they serve as the connection between researchers and PFACs and PFAs and can provide education and support. Their primary responsibilities include:
- Identify opportunities for PFACs and PFAs to contribute to research projects.
- Facilitate the selection and preparing of PFAs to partner with researchers.
- Inform researchers how to access to PFAC and PFAs.
- Educate researchers on how to effectively partner with PFACs and PFAs.
- Inform researchers about the supports or resources that may be needed (compensation, stipends for transportation or child/respite care, interpreters).
- Collaborate with researchers to provide initial training to PFACs and PFAs as needed.
- Provide support and coaching to PFACs and PFAs as needed.
- Ensure that researchers keep PFACs and PFAs informed of progress of research projects.
Researchers and Principal Investigators. Successful research collaborations are those with principal investigators and other research staff who are skilled at building relationships, overcoming challenges to PFA participation, and communicating effectively with PFACs and PFAs. Their primary responsibilities include:
- Find out how to access PFACs and PFAs.
- Work with the Staff Liaison and chairs of PFACs/committees to identify opportunities to partner with PFAs.
- Budget for compensation and resources for PFAs needed over the entire project period.
- Build a relationship based on trust and transparency.
- Provide adequate orientation to the research project so that PFAs can fully participate.
- Facilitate discussions with PFACs and PFAs, utilizing methods that gather information from PFAC/PFA with “what matters to them” questions.
- Actively listen.
- Allow ample time for discussions.
- Keep PFAC/PFA informed of progress and outcomes as well as share how their recommendations have been applied or if they haven’t been applied, explain why they weren’t used.