Patients Helping Patients Blog
Patient-Centered Research: Is That a Thing?
Medical care is based on research. That was true in the time of Hippocrates, and it’s true in our 21st century lives. The scientific questioning that leads people to start experimenting and investigating something is as old as human intelligence – we’re a curious species, always trying to figure out the “why” on pretty much everything around us. Historically, the research that led to medical discovery has viewed people – the ones most often called “patients” or “subjects” in medical research – as just that: subjects in an experiment. That thinking has shifted over the last half century, though, particularly in light of the story of Henrietta Lacks, and the efforts of her family to have her recognized for the scientific contributions that are her “immortal HeLa cells” legacy.
Which brings me to my topic, patient-centered research, and the question of if that’s even actually a thing in 2018. I had two experiences recently that had me thinking of two aphorisms – or what the 21st century calls “memes”:
- YMMV – Your Mileage May Vary, meaning that what you experience in a situation might not be what the guy next to you experiences in the same situation;
- Objects in mirror are closer than they appear – a warning label that is engraved on side-view mirrors on cars in the US, Canada, India, Nepal, and Saudi Arabia.
My two recent experiences, one at a workshop meeting organized by the Robert Wood Johnson Foundation and AcademyHealth titled “Moving Patient-Centered Care Forward: How Do We Get There,” the other at the wrap-up meeting for a PCORI research project, “Defining a Roadmap for Patient Engagement in Imaging CER” (CER = Comparative Effectiveness Research), gave me some strong signals that the research community is waking up to the power of co-design, and people/patient inclusion in all aspects of medical research.
The RWJF/AcademyHealth workshop was framed around a series of four questions that asked how people/patients and medical providers could team up to make patient-centered care, and research into patient-centered care, a reality. The workshop was researcher and policy wonk heavy, with a patient-voice cohort of a dozen people. When I asked why it was still taking so long to get research discoveries implemented at the point of care, there was some pushback from the research folks, who thought I was saying that research should stop once something was known.
This reaction, which expresses frustration with the person/patient community for not “getting it” that research is a never-ending process – nothing in science is ever 100% known, everything is under constant review and challenge, which is how science works – is very frustrating to me, and to every other person/patient who is invited to participate in discussions like this. Person/patient-centered research that includes actual persons (the ones called patients) in the research process is something the patient community celebrates. What we WANT, though, is to see discoveries arrive in clinics and communities, not lie dormant in journals, where those discoveries become grist for more science, but not for actual practice. We’re looking to short-circuit Max Planck’s statement, “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” The only way to ensure the patient community, and the research community, can communicate well with each other without misunderstandings is to spend more time in each other’s company, at workshops like this, learning how to avoid what I call “the lost in translation effect.” That’s the YMMV thing I referred to up-post.
My experience with the PCORI-funded research project, and the wrap-up meeting I attended the same week as the RWJF/AcademyHealth workshop, was the one where the object (patient-centered research as an actual thing) in the mirror was pretty darn close: co-designed and implemented research was visible, and the communication between the research team and the patient-voice team was less fraught with lost-in-translation. Since the group had spent more than a year working on this project together, the communication kinks had been worked out over time, and we understood each other’s point of view well. The lost-in-translation stuff we encountered early in the project actually helped inform our work, and our insights in how to better co-design research based on our experience.
The PCORI project was an example of what I was asking for at the RWJF/AcademyHealth meeting: include people-commonly-called-patients in the DESIGN of research projects and activities. Then enlist us to participate in the implementation, the analysis of study results, and the public dissemination of results – THAT approach will drive wider, faster adoption of new discoveries and processes. An additional benefit will be to start eroding public distrust of science as something that “elites” do, that the average human is somehow seen only as a lab subject.
So hey, research and policy folks – work on having people/patients on your team from the very beginning. In fact, if you want to kick off some from-a-new-perspective discovery, ask patient communities to help you create your research question, and define your null hypothesis. Amazing stuff could ensue!
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.