Engaging Patients as Stakeholders to Foster More Open Communication With Primary Care Providers

Background/Aims: The philosophy of the Patient Centered Outcomes Research Institute (PCORI) is to “do research differently” by involving patients throughout the research process. By leveraging an existing resource of a senior “aging in place” community, we recruited patients to be stakeholders and help develop an intervention to create more open communication between primary care providers and patients. This was one of our initial forays into engaging patients as stakeholders. We wish to share our experience on the patient engagement journey. Methods: A reflexive, qualitative summary of our observations on the process of engaging patient stakeholders during all phases of a research study. Results: Five patient stakeholders, all older retired individuals, participated through all stages of the research process, attending regular stakeholder meetings and events and responding to impromptu requests by email or phone. Our patient stakeholders were an important part of the construction of the study materials, a visit companion booklet and a postvisit survey, and we featured their pictures and comments on the back of these tools so that study participants could better relate to their experience. One stakeholder was a former marketing professional who was instrumental in helping us formulate and sharpen the language and delivery of the intervention. When we encountered study recruitment problems, we held a patient stakeholder meeting to seek their advice. They provided us with suggestions that we incorporated into our workflow. Discussion: Expanding the relationship between patients and researchers was easier than expected and yielded a great improvement on the design and conduct of this research study. Engaging patient stakeholders was not only invaluable for the researchers but also created a reciprocal relationship. The researchers were asked by patient stakeholders for guidance in their own projects, e.g. in one case a patient asked the research team to help her plan an advance care planning workshop at a senior center. Our older retired patient stakeholders are not representative of all patients, but their availability allowed them to share their cumulative wisdom and insights –– not only as patients, but also as resourceful professionals –– with the research team