Patient voices will be at the forefront of conversation in Chicago later this week, when CreakyJoints holds a three-day summit where the ArthritisPower Patient Governors and the CreakyJoints Patient Council will convene to participate in discussions on a range of issues related to our community and research. The two groups will meet separately to concentrate on their specific goals, and will join together for meals and a general presentation on CreakyJoints and the Global Healthy Living Foundation.
At the start of the summit, the nine Patient Governors will receive updates on the development of ArthritisPower 2.0, our web-based and mobile app focused on rheumatoid arthritis and other musculoskeletal conditions. Set for release this fall, the app collects data from thousands of arthritis patients to support research, compare treatments and identify new ones, and, perhaps one day, help find a cure. The Patient Governors bring the patient perspective to the project by providing input into research design, identifying research needs and helping to prioritize CJ research requests.
Patient Governors will also hear about how PROMIS patient-reported outcomes can help improve care and decision-making, and will attend presentations on a variety of topics, such as opportunities and controversies surrounding pain management, clinical trials for new treatments, and linking patient health concerns and patient-centered outcomes research.
The Patient Council will gather for its inaugural meeting Friday through Saturday to review CreakyJoints’ forthcoming patient-centered medical guidelines for arthritis and related diseases. Eight of the 11 council members will be in attendance. The goal of the guidelines is to offer accessible, easy-to-understand information for everyone on their disease journey and will serve as an alternative to the dense and often confusing medical guidelines commonly distributed. In the guidelines, patients will find support that will help them take charge of their treatment and medical decisions, and ultimately live more successful, fulfilling lives.
Check back at CreakyJoints.org later this week for recaps of presentations and discussions, and see our Twitter feed, @CreakyJoints, for live updates from the event.