The American Heart Association, the Centers for Disease Control (CDC) and the Heart Foundation all mark February as a month to boost awareness and promote research that brings patients and providers practical solutions for the nation’s leading cause of morbidity and mortality: cardiovascular disease. According to the CDC, someone in the U.S. has a heart attack every 42 seconds, and about 610,000 Americans die from heart disease each year. Many PCORnet networks are busy leveraging PCORnet’s vast network and unique infrastructure in different ways to address cardiovascular disease. Two of these networks are the Health eHeart Alliance and PaTH: Towards a Learning Health System in the Mid-Atlantic Region.
In its efforts to drive cardiovascular disease research, Health eHeart Alliance (a PCORnet Patient-Powered Research Network (PPRN)) aims to gather more data about heart health from more people—including individuals who are healthy, those who have heart disease, and even patients with untreatable heart disease—than any research project has done before. With over 90,000 patients across all 50 states currently registered for its network, it’s off to a promising start. This initial success is due in part to its patient-led steering committee, which ensures the patient has a voice in recommending Health eHeart’s research questions and areas of focus. The Health eHeart Alliance is currently enrolling patients for its Health eHeart Study, which aims to develop new and more accurate ways to predict heart disease based on measurements, behavior patterns, genetics, and family and medical history. The network is devoted to making sure each participant’s voice is heard through all stages of research. With essential people-centric processes in place, along with new technology, user-friendly apps, and at-home data collection, Health eHeart makes it easier than ever to make a difference in cardiovascular research.
Another PCORnet partner network stamping out cardiovascular disease is PaTH. PaTH (a PCORnet Clinical Data Research Network (CDRN)) studies diverse populations and focuses on three specific areas of research: Healthy Lifestyles and Weight, Idiopathic Pulmonary Fibrosis, and Atrial Fibrillation. By linking electronic health record data across its six diverse healthcare systems, PaTH develops convenient survey methods that can be used to let patients share their perspectives on health topics with their healthcare teams, all while ensuring patient privacy. For example, primary care patients and individuals who have undergone or are considering bariatric surgery answer surveys of relevance to their cardiovascular health, including ones on diet, physical activity, smoking, and medication adherence. PaTH has also standardized data elements that can inform cardiovascular research, such as electrocardiogram (EKG) parameters, and is working to share insights from this process within PCORnet’s Cardiovascular Health Collaborative Research Group. By developing key tools to increase stakeholder engagement and patient participation, including the MyPaTH Story Booth in response to patients’ desire for a quiet, safe space to share their unique health experiences, as well as an online crowdsourcing tool, PaTH is able to answer the questions and concerns that matter most to the communities it serves.
Although Health eHeart and PaTH are distinct organizations, the two networks are both partners in PCORnet’s ADAPTABLE demonstration study. The study focuses on aspirin, a critical over-the-counter medication that has been taken by millions of people ever since German chemist Felix Hoffman was issued a U.S. patent for aspirin on February 27, 1900. Although researchers conclude that daily doses of aspirin are beneficial to patients with cardiovascular disease, it is not known which dosing quantities are most beneficial and to what extent. ADAPTABLE is answering that question with a three-year pragmatic clinical trial that compares the effectiveness of two different daily doses of aspirin widely used to prevent heart attacks and strokes in individuals living with heart disease. This study is putting patients in the driver’s seat and trailblazing the next era of patient-centered clinical research by involving Adaptors—patient representatives who work alongside researchers in all aspects of a trial, including designing the protocol, consent form, study portal, and study materials, in the research process. The Health eHeart Alliance supports the Adaptors, and PaTH is one of the CDRNs enrolling for ADAPTABLE.
Health eHeart Alliance and PaTH aren’t the only PCORnet initiatives conducting cardiovascular research. Among others, both LHSnet and pSCANNER are also PCORI-funded networks making significant progress in understanding and advancing cardiovascular research. Be on the lookout for more on these networks in the coming months!
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.