“What I bring to the table may be the most important but least measurable factor in arthritis research. I bring my lived experience into the room,” says Ms. Koehn, who is also a consumer representative with and board member of the Arthritis Alliance of Canada. She and other patient advocates play an active role in rheumatology research by directly impacting project protocols and research methodologies. “The conversation changes and deepens. Suddenly, it is not just a bunch of researchers and scientists sitting in a room talking in the abstract, but they are talking with someone who is living with the disease. I share a perspective that they may not know otherwise. They may not know that on some days my RA is so bad that simply looking after daily hygiene is difficult.”
Patient input has made an important impact in the development of new therapies, says Ms. Koehn.
“When the first, Phase I papers on biologics were being presented at the ACR meeting, and at every plenary session for years, patient advocates like me kept asking, ‘When is it going to become available in a pill?’ Patient demand and input helped even if in a small way to develop something that patients didn’t mind taking. And now we have tofacitinib,” says Ms. Koehn. “That is one way we can contribute and impact the product stream. If you’re a patient, get involved in a clinical trial or study. It’s through the desire to get better and practicing altruism that science advances.”
Basic scientists, more than clinicians, may benefit most from patient feedback because they have little opportunity to talk to people living with rheumatic diseases, says Ms. Koehn.
However, recruiting patient volunteers to participate in clinical trials or policy-shaping meetings is challenging. Patients may be busy with work or family obligations and have little extra time for studies, Dr. Ranganath notes. They may not understand how their time and effort will contribute to better disease outcomes in the future.
Some funding organizations, like PCORI, require patients to be compensated financially for involvement in research projects, or patients may be paid as an incentive to participate in clinical trials.
‘Suddenly, it is not just a bunch of researchers & scientists sitting in a room talking in the abstract, but they are talking with someone who is living with the disease.’ —Cheryl Koehn, president, Arthritis Consumer Experts
Patients may support research in different ways according to their interest or experience. The Rheumatology Research Foundation, which has granted more than $131 million to research and training since 1985, recently created a strategic planning committee that includes patients who offer guidance as they plan future funding initiatives, says Mary Wheatley, the Foundation’s executive director.