Real-world, clinical insights and patient engagement central to improving health outcomes
WASHINGTON and CAMBRIDGE, MASS., November 9, 2015—The American College of Cardiology (ACC) and PatientsLikeMe have launched a partnership to explore innovative 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 announcement was made during American Diabetes Month and at the start of the week marking the International Diabetes Federation’s World Diabetes Day.
The Diabetes Collaborative Registry is the first global, cross-specialty clinical diabetes registry designed to track and improve the quality of diabetes and cardiometabolic care delivered to patients across the primary and specialty care continuum. The registry’s founding industry sponsor, AstraZeneca, is also a PatientsLikeMe partner and shares the goal to bring the patient voice into the center of scientific discovery and development.
ACC Executive Vice President of Science, Education, Quality and Publishing William J. Oetgen, MD, MBA, FACC, FACP said the collaboration will bring PatientsLikeMe’s expertise and engagement experience to the registry. “The Diabetes Collaborative Registry is focused on transforming the quality of clinical care, prevention and treatment and driving improvements in quality of life and outcomes for people around the world. We want to ensure that patients and providers get the most from the registry and from access to their health data. 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,” Oetgen said.
The collaboration’s first step calls for the ACC and PatientsLikeMe to reach 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 online patient community, which is open to any patient living with diabetes. Nearly 20,000 people already use the website to connect in forums and to track and share their experiences living with diabetes, including reporting the severity of symptoms such as fatigue, pain and depressed mood, quality of life, and the effectiveness of various treatments or non-drug interventions.
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. Okun said the collaboration has the potential to reach millions of patients given 1 in 3 Americans is expected to develop diabetes during their lifetime. “We’re excited to be partnering with the ACC given their deep experience with registries and unparalleled partner support. We expect that patient-generated data and data from clinical encounters will help create a vision of health for all people living with diabetes—a vision focused on improving outcomes that matter most to patients.”
PatientsLikeMe welcomes anyone living with type 1 or type 2 diabetes to join patientslikeme.com for free at www.patientslikeme.com.
Nearly 30 million children and adults in the United States have diabetes, and 2 out of 3 people with diabetes die from heart attacks or stroke. Type 1 diabetes mellitus, usually diagnosed in children and young adults, can occur at any age when the pancreas does not produce insulin, a hormone needed to control the body’s blood sugar levels. It requires daily monitoring of blood glucose (sugar), insulin therapy, diet modification and exercise. Type 2 diabetes mellitus is characterized by insulin resistance or desensitization and increased blood glucose levels. It is a chronic disease that can develop gradually over time and can be linked to both environmental factors and heredity.
The Diabetes Collaborative Registry® is the first, real-world, interdisciplinary, quality improvement-driven, clinical data registry aimed at tracking and improving the quality of diabetes and cardiometabolic care across the primary and specialty care continuum. Led by the American College of Cardiology, in partnership with the American Diabetes Association, the American College of Physicians, the American Association of Clinical Endocrinologists and the Joslin Diabetes Center, the Diabetes Collaborative Registry is a big data collaboration that allows for a longitudinal study of diabetes across all stages of the disease—including presentation, progression, management and outcomes—even as patients receive treatment from multidisciplinary care teams. The mission of the Diabetes Collaborative Registry is to generate data-driven, evidence-based insights and solutions that will transform the future of personalized, high quality care and outcomes for people across the globe. The registry is sponsored by AstraZeneca and Boehringer Ingelheim Pharmaceuticals, Inc. For more information, visit TheDiabetesRegistry.org.
The American College of Cardiology is a 49,000-member medical society that serves as the professional home for the entire cardiovascular care team. The mission of the College is to transform cardiovascular care and to improve heart health. The ACC leads in the formation of health policy, clinical standards and practice guidelines. The College operates national registries to measure and improve care. It also provides professional medical education, disseminates cardiovascular research and bestows credentials upon cardiovascular specialists who meet stringent qualifications. For more information, visit acc.org.
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.
Margot Carlson Delogne