Building Research Partnerships with Physicians and Patients

“At the last medical conference I attended, we were all told to find an anthropologist to work with on our research.” These were the opening words of a medical department director as we met for the first time to discuss possible collaborations. Anthropologists often assume we are the supplicants, needing others to gain access to our research population with little or nothing to offer in return. In fact, we have much to offer that health professionals and patients value. If we are willing to inclusively reshape research ideas and methodologies to answer anthropological questions as well as questions relevant to all partners, collaborations are not only possible, but may be exceedingly fruitful and interesting.

Most research is done following what has been called a research to practice or research to policy model, in which scientists conduct a study that fills a gap in the literature and disseminate the results, with the expectation that their brilliant findings will be implemented by practitioners or policy makers. Recently Vivian Tseng (William T. Grant Foundation Annual Report, 2012) and Tom Weisner (presentation at the SPA biennial meeting, 2013) have outlined a practice to research model in which collaborations with practitioners start at the question-development stage so that the research is immediately relevant to local practitioners by design.

A new major funding organization, the Patient-Centered Outcomes Research Institute (PCORI), requires collaborative research partnerships and encourages patient research partners (PRPs), in which patients are engaged in research design and execution so that the resulting findings are relevant to them. Collaborative research is increasingly common, and anthropologists — because learning others’ worlds and languages is our bread and butter — are perfectly situated to build research partnerships.

I have found collaborative partnerships to be inherently innovative, merging perspectives and methodologies that generate unique insights into health care processes, interactions, and outcomes as well as the illness experiences of patients and their families, while also expanding anthropological knowledge and theory. It is a win-win scenario. That is not to say that it is easy, however.

Here I recount multiple experiences I have had trying to establish collaborative partnerships with physicians and patients. I conclude with a summary of the considerations and steps I have found to be most useful in building successful partnerships.

WIIFMs and Methods

I have partnered with physicians on research for over a decade now, but my start was rocky. As a new NSF Advance Fellows post-doc, I was funded to conduct research on how patient access to medical information online shaped illness experience and clinical interactions. I erroneously assumed that physicians at a university medical center would be willing to let me do research in their clinics because contributing to general knowledge is an inherent good. When I pitched the research idea to a group of physicians, I was interrupted with:

“What’s the Whiffim?” a physician asked.

“I beg your pardon?” I said.

“The Whiffim: What’s in it for me? [WIIFM]” he explained.

In academic clinics, physicians — just like the rest of us — work impossible hours and are continually pulled in multiple directions. Why should they add anything to their plates if it doesn’t help them meet their own professional expectations? In hindsight, it was an obvious concern that I had overlooked. And so I’ve learned, that like any fieldwork, our collaborators need to get something from the project for it to be worth their while. One WIIFM that I have found valued by health care providers is publications. I’ve made it a priority that the first publication written based on any collaborative project is designed for a medical journal co-authored with physician partners. To do this, I had to learn a new set of methods.

In the study looking at how patient access to online health information affected illness experience and clinical interactions, I had planned to use ethnographic methods of participant observation, clinical interaction recordings and interviews. So I was unprepared when the physicians queried, “Which measures are you using?” “Measures?” I thought. Physicians are used to working on collaborative teams and I’ve found that the sooner I am willing to expand the methods and reshape the project design to address multiple disciplines, the better the collaboration proceeds.

I went back to the research design drawing board. I read medical journals, talked with social scientists who use mixed methods, reread Bernard’s texts on anthropological methods and consulted the collaborating physicians on the questionnaires and scales — that is, measures — that they found most useful for their clinical populations. I rewrote the IRB application for a mixed methods study, and have never looked back.

This doesn’t mean that I’ve lessened my commitment to person-centered and contextual research methods. Not only do I find these data intrinsically fascinating, I have found that physicians too are fascinated by the stories, patterns and insights that qualitative data can yield. Indeed, the ability to explain the contextual and narrative reasons behind quantitative findings is one of the real methodological strengths that anthropologists can bring to the collaborative table.  Adding quantitative measures meant that our research findings also made sense within the medical landscape. It has enabled me to write and publish with physicians in the journals they and their colleagues read as well as in anthropological journals; collaboration has improved the impact of my work.

Building Successful Partnerships

I haven’t always been successful at building partnerships. Recently I was a member of a team of social scientists interested in partnering with a group of providers. We worked with them to refine a pilot research project and then we started the IRB process, which took a total of 9 months (4 months at my university, 5 months at the medical center’s). By the time we were approved our physician partners were in the midst of major new projects and had lost interest in our joint pilot study. In hindsight, the IRB was not our only hindrance. We had held meetings with the physicians, yes, but not enough for us to truly develop a partnership. Our team of social scientists did most of the work to develop the study and the physicians had been willing to facilitate it but — to borrow a sports metaphor — they had no skin in the game. For them, it became an easy project to drop when things got busy.

Designing collaborative studies that matter to all partners often takes time. I have worked on multiple collaborative projects that have taken two years or more of repeated conversations honing and refining research design, writing and rewriting grant proposals before projects launch. For example, one project proposal with a physician partner is currently on its fifth iteration. In the latest proposal, we invited PRPs to join us, and over countless teleconferences we listened to each other, honed ideas, drafted and redrafted until we arrived at a proposal that is designed by and for patients and their physicians, and will, if funded, also expand our understanding of how everyday life is punctuated by disease management. It is a project with great potential to yield findings relevant to all stakeholders. Could I have designed a project more quickly on my own? Definitely. Would any project I designed on my own have as much potential to make a significant contribution not only to anthropology but also to medicine and patients’ lives? No. So I now budget considerable time for building collaborative partnerships.

Yet partnerships don’t always take a long time to develop. In the case of the project with a slow IRB and lost clinical interest, our team of social scientists decided to take a different tack. We refocused our proposal and pitched the idea to a different group at a different hospital. They were intrigued. We met with them and together refined the questions and methods. They proposed ways they would be active in implementing the research project. It took a swift eight months from that first meeting to the start of data collection, including IRB approval and pilot funding. With the right collaborator, establishing productive partnerships can be remarkably easy.

Take Home Messages

These are the steps I have found most fruitful in building collaborative research partnerships with providers and patients:

  1. Find out the relevant WIIFMs of collaborators and prioritize meeting them.
  2. Ensure that all partners have skin in the game — that is, the research project addresses something that matters to all partners and they too have invested time and energy into the collaboration.
  3. Explore ways to streamline IRB approvals, such as negotiating agreements between IRBs so that only one review is needed.
  4. Be patient; collaborative projects can take a lot of time to get off the ground but it is well worth the time invested.
  5. Working with physicians and patients, being allowed into their local worlds and lives is an immense privilege.

I have come to see the building of research partnerships with physicians and with patients, not as the background work but as part of the good stuff of ethnographic research. Whether in clinics or in the classic village field sites, doing anthropology means building partnerships: to learn the lay of the land; to acquire a working knowledge of local language, knowledge and concerns; and to develop trusting collaborations for mutually interesting and beneficial research.

Acknowledgements: My thanks to Louise Beryl who stimulated the idea for this paper, and to the colleagues, physicians and patients who have taught me the joys of collaborative research.

Cameron Hay (www.mcameronhay.com) is an associate professor of anthropology and coordinates global health at Miami U, Ohio. She is also an associate research anthropologist at UCLA’s Center for Culture and Health. Her research focuses on how health and illness are understood and managed in clinical interactions and in everyday life.

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