Inspiration Leadership Community

Engaging Patients In Their Own Decision-making

This medical student had always heard of patient-centered care but it wasn't until she joined this innovative group that she saw it in action.

By Mara Gordon

When I showed up to my first Stress In Pregnancy: Improving Results with Interactive Technology (SPIRIT) meeting last summer, I wasn’t sure what to expect. SPIRIT is a participatory research group, meaning that patients, providers and clinic administrators all work together on projects. Based in the Helen O. Dickens Center for Women’s Health at the University of Pennsylvania, SPIRIT got started to help address disparities in mental health services for pregnant women from underserved communities. Depression in pregnancy is a sticky subject, and many women feel afraid to ask for help. So why not involve them in the process? 

  I arrived a little early and sat quietly in the lobby of the women’s clinic. The patient traffic had died down for the day, but soon the group members started trickling in: moms, their daughters, and medical assistants winding down after a busy workday. Soon the social workers, nurses and doctors arrived. The group debated the details of the latest version of a patient decision aid that the group had been working on for almost two years, then munched on cookies and cooed over babies.
A 23-year-old woman, with an adorable toddler on her hip, bantered with my mentor and leapt in when she had something to say. Nurse practitioners, social workers and medical assistants all sat together, offering their thoughts. It was different from anything else I had experienced in medical school. What I didn’t realize then is that over the next year, this group would transform my ideas about what is possible in primary care research.
I got involved with SPIRIT because I wanted to work with Ian Bennett, a faculty member in Penn’s Department of Family Medicine and Community Health. I knew he worked on issues surrounding perinatal depression, a complex psychosocial issue that requires an interprofessional approach. He invited me to that first meeting last summer to see if it might be a good fit for my research project during my fourth year of medical school, and I remember feeling blown away by seeing such a diverse group of people working together.
During my time with SPIRIT, I was a part of a group that worked on the development of an iPad decision aid to help patients understand what treatments are available for depression in pregnancy. I have spent a good part of the last academic year working on this project for my “scholarly pursuit,” a research requirement during our fourth year at Penn. The decision aid we’re working on walks pregnant women through a variety of treatment options for depression, helping them navigate which choices might make sense for their lives.
For all the talk of patient-centeredness I heard throughout medical school, being part of SPIRIT was the first time I had actually seen patients and providers working side by side. As we developed the decision aid, we asked many questions that patients could answer better than researchers could. What do patients want to know about depression? What barriers do they face getting that information? How can we use technology to work for — not against — our goals of engaged and educated women?
What excites me about participatory research is how each person’s expertise complements the others’, making the group more powerful together than the sum of its parts. My mentor Ian Bennett is an expert in medical care for pregnant women, but he’s never gone through what our patients have. They are the experts in the stigma they face while trying to access mental health services, the places they turn for support, and the way they use technology to get information and make decisions about their health. The clinic administrators and medical assistants understand clinic flow and opportunities for patient education, and the social workers are the experts in Philadelphia-area mental health resources. Together, this body of knowledge is much richer than it could ever be individually.
This exposure to participatory research has made me excited about the possibility of a career in academic primary care. My previous experience in medical research involved spreadsheets and old patient records. With the SPIRIT group, we still need the spreadsheets, but it’s exciting to be part of a dynamic group that not only values our patients’ perspectives but is made better by it. As a future primary care doctor, I’ll be uniquely situated to do this kind of interdisciplinary, patient-centered scholarly work. It’s exhilarating to feel like our research is relevant to the people we most want to help — because they are equal partners in defining the research agenda.
Mara Gordon is a fourth-year medical student at the Perelman School of Medicine at the University of Pennsylvania. This summer she will become a family medicine resident there. She plans to pursue a career in academic primary care. Her fourth-year research project is supported by a grant from Patricia Kind. 

Read about other innovative pregnancy programs for students.
Posted by Sonya Collins on Apr 7, 2015 7:19 AM America/New_York
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