Rheumatology as Trailbazer in Patient Engagement

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Patients can play a critical role in disseminating high quality healthcare, and rheumatology has been a trailblazer for giving them a voice in how they receive treatment.

By sharing personal experiences and knowledge about how these conditions impact daily life, patients are in a unique position to influence treatment guidelines for rheumatic diseases. Their first-hand knowledge can not only lead to more personalized therapy plans, but it can also educate clinicians and improve research efforts.

Over the past decade, rheumatology has taken significant steps to engage patients as patient research partners. And in doing so, according to a viewpoint article in the Annals of the Rheumatic Diseases, rheumatology has set an example for other specialties to follow.

“We believe that this has been a feature of the pioneering role that the specialty of rheumatology has historically played in patient involvement in research and that this process is continuing within the specialty. We hope that the specialty of rheumatology will retain its enviable leading role in patient and research collaborative research in the future and will remain an exemplar to many other specialties,” wrote authors Maarten de Wit, Ph.D., of Amsterdam University Medical Center, and Adewale Adebajo, a rheumatologist and clinical director at Barnsley Hospital in the United Kingdom.

The authors reviewed several rheumatology organizations’ collaborations with patients. For example, the European League Against Rheumatism (EULAR) developed a patient research network for patients and medical professionals to design international rheumatic disease management recommendations. EULAR also created patient-derived impact-of-disease scores for rheumatoid and psoriatic arthritis. Additionally, the Patient-Centered Research Institute launched two patient-powered research networks into several conditions, including rheumatoid arthritis and vasculitis.

Patients also influence research efforts. With their input about how fatigue affects day-to-day activities, Outcome Measures in Rheumatology added the symptom as a mandatory outcome to the rheumatoid arthritis core set. And, the Foundation for Research in Rheumatology seeks patient feedback on all research proposals seeking grant funding.

As a result of patient integration more than 500 publications include patient names as co-authors, representing more than 200 individuals with rheumatic conditions.

Overall, the authors wrote, these steps reveal the need for strong patient-clinician relationships to treat and manage long-term rheumatic conditions, as well as achieve best outcomes.

REFERENCE

Maarten de Wit, Adewale Adebajo. "Unique role of rheumatology in establishing collaborative relationships in research. Past, present and future of patient engagement," Annals of the Rheumatic Diseases. http://dx.doi.org/10.1136/annrheumdis-2018-214387