The Culture of Participatory Research

My recurring mind loop these days is non-traditional patient, non-traditional patient, non-traditional patient. I heard it repeatedly while attended a one-day symposium, Putting Patients at the Center of Research: Opportunities for Ethical and Regulatory Oversight at

Harvard Law School’s Petrie-Flom Center. See a great report written by Andy Oram about the symposium here. The symposium showcased a PCORI (Patient-Centered Outcomes Research Institute)-funded study about patient involvement in research in non-traditional roles (not the subject*). The study actually focused almost exclusively on Institutional Review Board (IRB) perceptions of patients in non-subject roles. Interesting focus since the role of the IRB is to protect patient rights in research studies as subjects, not other roles.

*Please note: Subject is a loaded word for some. They say participant rather than subject, a more egalitarian term. I’m sticking with using subject because I’m introducing the label of Participatory Research. I don’t want to confuse the issues.

No one’s ever accused me of being a traditional patient and I’m not defensive. Right:) You know I’m heavily involved with PCORI whose reason for being is to fund research that matters to patients and will benefit patients. It’s odd that a PCORI-sponsored study would label anything a person does who is not an academic and not a subject of a research study as non-traditional. The roles the study refers to as non-traditional are membership in the research team as an investigator, advisor, consultant, recruiter, or disseminator. It seems that the study started with a bias when they called other roles, nontraditional, rather than, say, non-subject roles. It didn’t call researchers who include patients in non-subject roles, non-traditional researchers.

My patient/caregiver activism rests on a foundation that patients and caregivers should have a seat at the table for governance, design, operations, and learning of healthcare policy, planning, delivery, improvement, and research. It makes sense that much of the research industry feels like a fish out of water with patients in their midst. Perhaps labeling (non-traditional) is a reflection of their acute discomfort with other. We call people of the Navaho nation whose ancestors lived in the continental US before the Puritans, American Indians. We call people who emigrated from China during the California Gold Rush, Chinese Americans. Yet, I’m white, first-generation American. I’m not called Dutch/German American, just American. Perhaps when many researchers think patient, they think someone wearing a hospital gown with their butt crack bare, not skilled, insightful, hardworking, curious, passionate people like themselves. Other.

As a reviewer of PCORI funding requests and co-chair of an Advisory Panel, I’m fortunate to be part of a leading edge of culture change in the human research industry: Participatory Research. I have seen research teams with patient/caregiver stakeholder Investigators and Advisors paid on equal footing as the academics. I’ve even seen respite care budgeted for carees of caregivers, so they could free themselves to participate in any role. Culture change seldom occurs by waving a magic wand. Rather it moves in fits and starts as the bulk of researchers follow Participatory Research early adopters. Early adopters see participatory research as a no-brainer. Those that follow feel like they’re putting round pegs in square holes. They question the capacity, skill, and confidentiality of lay people in research team roles. They think patients need to be protected, that they need to become more research literate. A great research team has members with statistics and methods expertise, recruitment expertise, project management expertise. Often with less experience with patient/caregiver life flow and direct care clinician workflow. They seldom require life experience training or statistical training for those without such experience. However, everyone, no matter the role, needs to have documented understanding of the rights of subjects and confidentiality of individual data.

I appreciated the presentations at the symposium of three patients (Jane Permuller, Marty Carney, and Paul McLean) in non-subject roles highlighting the benefits of patient participation in research. I also respect Harvard Law School’s Petrie-Flom Center for scratching the surface and reminding us (me) that the spread of participatory research is in its infancy and we activists have much work to do.

Danny van Leeuwen

About Danny van Leeuwen

Patient/Caregiver activist empowering people as they travel toward best health

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