I was diagnosed with rheumatoid arthritis when I was 16, which was 43 years ago. It was a very rough road in the early years. I had so much pain in my hips, I sometimes couldn’t walk. I missed 45 days of school in the 11th grade. Then I had over 20 operations to repair, replace, or fuse my joints. Every six months, I was having something repaired.

But because of research, the road got a lot less bumpy. New treatments became available: new drugs, new surgical options. My life changed tremendously when the new biologic drugs came out. They counter proteins and cells that are involved in joint inflammation. I just can’t tell you the difference, like day and night, with the new drugs. I bet I tried every drug that was out there until this new class came along.

I learned early that I was a part of a huge problem, one that we now recognize each May during National Arthritis Awareness Month. Over 50 million people in the United States have arthritis. So I wanted to be part of the solution.

From Support Groups to Research Support

I first got involved with the Arthritis Foundation 30 years ago. With the office here in Memphis, I started the first arthritis support groups. Just being with other patients who are experiencing similar challenges makes the illness more bearable. We exchange information and learn tricks, like getting a bag of peas out of the freezer to put on a sore and achy neck. Sharing experiences makes a huge difference.

Next I became an advocate with the Arthritis Foundation. With other arthritis patients, I met with my congressional representatives in Washington, DC to urge affordable access to medications. And my next step was training to teach medical students how to examine their patients with arthritis. I still maintain that program at the University of Tennessee Health Science Center. I also helped a lot of residents learn to inject joints by letting them practice on mine.

I knew that my experiences, and learning about those of others in support groups, could help researchers answer the questions that matter to those of us with arthritis. I wanted to make sure research helped future patients answer their questions about their own care. So I joined PCORI’s Ambassador Program, which helps patients and other champions of PCORI share its story. I’m looking forward to going out in the community and talking about patient-centered research.

I also attended the first PCORI Annual Meeting last fall. That was so exciting. I was honored to be invited to help plan the next national meeting, which is coming in November. I would also enjoy being a patient partner on a research project.

Beyond Medications

Usually when I think about research with arthritis, clinical trials of medications come to mind. But there’s so much more to treating arthritis than just medications. Arthritis can be a very costly disease and an open dialog with your physician is essential. Trust, truth in treatment, compliance, and time with your physician are some of the factors to be considered in doctor-patient relationships. Research examining the best approaches to promote these relationships is important.

I know that PCORI is already looking at that connection between patients and doctors. In a project that recently started, researchers ask how best to provide information to osteoarthritis patients considering joint-replacement surgery and how to find out about their preferences. Another new PCORI-funded study is considering ways to get patients the information they need about medication risks and benefits. Yet another study found that an electronic questionnaire can help improve doctor-patient communication. (Read more about this study in The PROMIS in Putting Patients' Waiting Room Time to Good Use.)

Today my arthritis is under control. My life is full, with precious grandchildren, water aerobics, and my passion to help others with arthritis. I continue to volunteer with the Arthritis Foundation, and teach at the university. And as a patient, it’s clear to me that the patient's voice matters in the doctor's office. PCORI research is showing how important patients’ voices are in research, too. I’m so thankful that research has kept me on my feet to enjoy life.