For the past 16 years, the website, creakyjoints.org, founded by arthritis patient Seth Ginsberg and social entrepreneur Louis Tharp, has offered arthritis patients and their families a safe online community where they can receive meaningful support and education. In March, the online portal added a new initiative—Arthritis Power, the first-ever patient-led, patient-generated, app-based research registry for arthritis, bone and inflammatory skin conditions. Using Arthritis Power, patients can track their symptoms, treatments, medications and health data using their computers or smart- phone (iPhone and Android). By partnering with rheumatology researchers at the University of Alabama at Birmingham and with support from the Patient-Centered Outcomes Research Institute (PCORI), Arthritis Power hopes to enhance informed healthcare decision making by assessing patient-recorded outcomes (PROs).
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Explore This IssueOctober 2015
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In recent years, there has been a growing interest in the assessment of patients with arthritis from the patient’s perspective. PROs have been expanding across clinical care settings to document the progression and fluctuation of a patient’s disease and help patients record their symptoms between doctor’s appointments. PROs complement such measures as lab data and swollen joint counts, resulting in office visits that are more efficient and effective.
A series of clinical studies released in May by Cardinal Health Specialty Solutions emphasized the important role that PROs play in advancing patient-centered care. One study used PROs to demonstrate that rheumatologists significantly underestimated the impact of RA disease burden and treatment on their patients’ sense of well-being. The study went on to report that understanding this disparity in perceptions can help doctors to make effective treatment decisions that lessen the burden on patients and, in some cases, also reduce the cost of their care.
Both Patients & Providers Benefit
“Arthritis Power enables patients to regularly check their health and assess how they are doing over a specific period of time,” says Jeffrey Curtis, MD, MS, MPH, of the University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology, and a William J. Koopman Endowed Professor in Rheumatology and Immunology. “Arthritis Power measures sub- tle changes that can occur if a medication is altered and can also address concerns that go beyond pain and function.”
Using the Arthritis Power app, patients and their doctors can see whether their symptoms are changing or holding steady over time, monitor how they are respond- ing to medications, and view their health reports in daily, weekly or monthly snap- shots. Patients can then e-mail secure reports to themselves or their doctors.