The American College of Cardiology (ACC) and PatientsLikeMe have teamed-up to explore ways to make real-world patient feedback and experience more central to diabetes research and care. Focused on the ACC’s Diabetes Collaborative Registry, the partnership will encourage people living with diabetes to offer perspectives to enhance and accelerate the registry’s research and development agenda.
The Diabetes Collaborative Registry is the first global, cross-specialty clinical diabetes registry made to track and improve the quality of diabetes and cardiometabolic care.
“We want to ensure that patients and providers get the most from the registry and from access to their health data,” said ACC Executive Vice President of Science, Education, Quality and Publishing William J. Oetgen, MD, MBA, FACC, FACP. “Our partnership with PatientsLikeMe makes the patient voice central to science, and will enable us to explore ways to effectively engage patients and work with them to define potential opportunities to enhance the registry’s impact.”
Practices participating in the Diabetes Collaborative Registry will be able to offer their patients access to the PatientsLikeMe website.Under the deal, the collaboration will start with the ACC and PatientsLikeMe reaching out to people living with diabetes to identify priorities for the registry’s research and program development agenda. Practices participating in the Diabetes Collaborative Registry will be able to offer their patients access to the PatientsLikeMe website so they can become part of the 20,000-member-strong online patient community, which is open to any patient living with diabetes.
Also as part of the collaboration, Sally Okun, Vice President of Patient Advocacy, Policy and Safety at PatientsLikeMe, will hold a position on the Diabetes Collaborative Registry Stakeholder Advisory Panel, which provides guidance and recommendations to the registry’s member governance committees. According to Okun, the collaboration has the potential to reach millions of patients given 1 in 3 Americans is expected to develop diabetes during their lifetime.
PatientsLikeMe is inviting everyone living with type 1 or type 2 diabetes to join patientslikeme.com.