I care about what works for people on their health journey. How do lay people make choices for themselves in partnership with their clinician partners? So much affects our health choices, not just our medical decisions, but our behavior, our communities, the environment and the systems we use to survive and live well. I’m very interested in research, but I’m also a skeptic: How does this study help me? How does it help my family? How does it help my clinician partners? How does it help the people who support and care for us? We are the people at the center of care. Just because we found out that something might work in a lab, does that mean will it work for us?
As a patient (with Multiple Sclerosis), a caregiver, and a nurse, I’m a student of the health journey. What works? What doesn’t? For whom? If it works for one, will it work for another? If science says it works, will it really work for me? When I first read about the Patient-Centered Outcomes Research Institute (PCORI), I looked them up online and saw that they included people like me. I was intrigued and reached out to them. I was invited to join a group of 200 people in DC in 2012 to meet with the staff of PCORI and soon began to review funding requests as a patient stakeholder. I was pretty intimidated at first. What the heck am I doing here with these scientists and doctors and administrators?! But I knew about the day-to-day lives of people at the center and could speak about how research might affect people and whether it was useful. I found that I was respected and listened to. I felt I had an influence. It was pretty heady stuff.
I was able to say that we had to think about the caregivers and parents of people who were sick as much as the people who were actually sick. I was heard. I was able to say that pain couldn’t just be treated with drugs and by doctors and nurses. Meditation, exercise, diet, massage, chiropractic, physical and occupational therapy helped, too. I know about pain. I was heard.
I was able to say that people wanted to live the best life possible and get over what ailed them, but had trouble with transportation, taking care of their kids or their parents, keeping their job, paying the rent. It wasn’t just about adherence to prescriptions. We had to consider real life. I was heard.
I asked if this research doesn’t get to people at the center of care when they need it, in a way they can understand it, the research is only ink on paper. I don’t have much time or interest to read a professional journal. Rather, I’m making health choices at the dinner table, at my place of worship, having coffee with or taking a walk with friends, or at work. Frankly, not so much in the doctor’s office. So what are the best ways to get research findings to us where we live and gather? I was heard. I was appointed to PCORI’s Communication and Dissemination Advisory Panel and the Panel elected me co-chair. Right now the Panel is talking about how to communicate uncertainty. After all, research says that something might work or that A works some better than B. Research isn’t done if it’s for sure. Who studies whether to look both ways when you cross a busy street? Life is uncertain. Get over it. Trust is more important than certainty. I build a health team that I trust. Then I mostly listen to them. Let’s study trust.
I have to say that even though I’ve been reviewing funding applications for 4 years, I know enough to be dangerous about the science of research. Thankfully, being involved with PCORI so many scientists have taken the time to explain research methods to me so I understand. I’ve learned to appreciate the challenges of science and they’ve learned to appreciate the challenges of life. Lately, I think the scientists think as much as I do about the life flow of the patient and the workflow of the clinician. I understand that the research might really matter to people, but if the science isn’t solid we haven’t learned anything that can be shared.
I respect PCORI because it’s a learning organization. It includes patients, listens to patients, and has changed how they do their work because of what they’ve learned from us. And they’ve spread the word.
PCORI was funded as part of the Affordable Care Act. Its funding ends in September of 2019. I hope Congress educates itself about PCORI and listens to constituents who benefit from PCORI’s work to ultimately support its reauthorization.
See also PCORI and Us.