Pamela Richards, who lives in Bristol, U.K., and is the current chair of OMERACT’s Patient Panel, distinctly recalls her reactions when she attended her first OMERACT conference. “It was quite an amazing experience just to be with so many people who were researching the condition I had, and interested in the nitty-gritty of it,” she says. “My previous experience with doctors is that they would focus on the things they could do, but all of the other things were irrelevant. Some of the things I experienced were not in their textbooks and were not validated as being part of RA. Also, my experience of living with the condition every day had not been put to good use.” That all changed, says Ms. Richards, when she attended OMERACT 7, held in Monterey Bay, Calif.
As with many others who have participated in the OMERACT process, Ms. Richards has found stimulation to initiate other projects. “My passion is to focus on enabling other patients to become individual research partners,” she says. “Not everyone can attend OMERACT. However, people around the world can have the same kind of purpose by participating in their own area, not just as ‘token patients,’ but in a very positive way [e.g., to help structure protocols for clinical trials].”
To that end, Richards (together with Maarten de Wit from The Netherlands) was instrumental in formulating an OMERACT glossary targeted for patient representatives to familiarize them with the OMERACT process. She has also co-produced a three-hour patient-training workshop, which will debut at EULAR in June. She anticipates helping to foster patient groups such as the one connected with Dr. Kirwan’s department at Bristol, and credits her experiences with OMERACT as the catalyst for her activism. “These people are incredible academics, but they also recognize that patients are people. They see us [the patient representatives] as people they can work with, not just patients they treat.”—G.H.
