Patient involvement in medical research: what patients and physicians learn from each other

Abstract

BackgroundThere is increasing interest in actively involving patients in the process of medical research to help ensure research is relevant and important to both researchers and people affected by the disease under study. This project examined the recently formed Vasculitis Patient-Powered Research Network (VPPRN), a rare disease research network, to better understand what investigators and patients learned from working on research teams together.MethodsQualitative interviews were conducted by phone with patients, physician/PhD-investigators, and study managers/staff who participated in the network. The question guiding the interviews and observational analysis was: “What have investigators and patients learned about working together while working on VPPRN teams?” Interview transcripts were analyzed in combination with observations from multiple in-person and telephone meetings.ResultsTranscripts and notes were reviewed and coded from 22 interviews conducted among 13 patient-partners, 5 study managers/staff, and 4 MD or PhD-investigators, and 6 in-person and 42 telephone/web-conference meetings. Patient-partners and investigators characterized their working relationships with one another, what they learned from their collaborations, and provided recommendations for future teams of patient-partners and investigators. Major themes included the great benefits of communicating about activities, being open to listening to each group member, and the importance of setting reasonable expectations.ConclusionsDirect engagement in research design and development by patient-partners and co-learning between investigators and patient-partners can result in a positive and productive working relationship for all members of a medical research team. This bi-directional engagement directly benefits and impacts research design, participant recruitment to studies, and study subject retention.

New Insights into Immunological Involvement in Congenital Disorders of Glycosylation (CDG) from a People-Centric Approach

“…Health education and literacy for non-experts are becoming increasingly important, particularly as we are entering an era of personalized medicine that will require patients to play an active role in health decision-making [90]. Having patients/families as research partners-and not only mere participants-is the logical next step in this new paradigm [91]. (i) developing an informative and multi-platform recruitment strategy; (ii) adding logic to specific questions which result in a longer questionnaire if immune issues were present.…”

“…Health education and literacy for non-experts are becoming increasingly important, particularly as we are entering an era of personalized medicine that will require patients to play an active role in health decision-making [ 90 ]. Having patients/families as research partners—and not only mere participants—is the logical next step in this new paradigm [ 91 ].…”

A taxonomy of impacts on clinical and translational research from community stakeholder engagement

“…[17][18][19][20] With valuation standards and metrics, the meaningful engagement of patients and other community stakeholders could be studied scientifically and adopted with more confidence in clinical research, which is still largely done to patients as participants rather than with them as stakeholders in a bidirectional interaction. [21][22][23] It is imperative to capture community stakeholder input consistently and develop measures for the value of the community stakeholder contributions to research.…”

“…Interactions between researchers and community stakeholders are not consistently captured in a standard or ordered framework, nor is the value of community stakeholders' activities to the research enterprise being measured . With valuation standards and metrics, the meaningful engagement of patients and other community stakeholders could be studied scientifically and adopted with more confidence in clinical research, which is still largely done to patients as participants rather than with them as stakeholders in a bidirectional interaction . It is imperative to capture community stakeholder input consistently and develop measures for the value of the community stakeholder contributions to research.…”

COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia

“…Participatory research methods have been associated with better networking between participants, higher relevance for affected people, patient empowerment, and higher participation rates (22)(23)(24).…”