The American Heart Association’s New Institute for Precision Cardiovascular Medicine
“One size does not fit all.”
These 6 simple words represent the fundamental concept driving an unprecedented initiative of the American Heart Association, the Institute for Precision Cardiovascular Medicine. In the field of heart disease and stroke research, we have seen enormous knowledge advances in recent decades, all of which have led to breakthroughs in our ability to treat and prevent these illnesses. We celebrate these advances because they are allowing us to save and improve more lives than ever before. Despite these great advances, there are still far too many patients suffering and dying prematurely. Through tremendous advances in cardiovascular science and the translation of knowledge into more effective therapies, a problematic aspect of many current therapies is that their efficacy can be variable. We are still not sure why some patients respond more favorably to certain medications, or certain dosages, than others. And we still cannot predict why a given surgical technique will achieve widely different results among patients. It seems clear that when it comes to providing patients with meaningful, efficacious solutions, one size does not fit all. We created the Institute for Precision Cardiovascular Medicine because we need to learn more, much more, about the patients who depend on us to provide care that is best suited for them. Each patient has a unique genetic profile, has unique lifestyle habits, and has been affected by unique environmental factors over the course of his or her life. All of these factors play a critical role in determining which approach might be best for addressing a patient’s needs and in recognizing potential red flags that can complicate the treatment process or cause unnecessary risk. In addition to learning about patients, we want to find better ways to get to know patients. There is no shortage of discussions in the scientific literature about the need to improve doctor-patient communication and consider the quality of the overall patient experience as opposed to focusing solely on treatment outcomes. Patients should be given a platform to express their preferences and concerns, not only with respect to the clinical setting, but also in the design of research studies. All of us in the medical profession want to do our best on behalf of patients, and more effective listening to patients should improve their care.
To help accomplish this, we announced a partnership with the Patient-Centered Outcomes Research Institute that uses crowdsourcing to give patients a powerful voice in their own care. Since its launch at Scientific Sessions 2015, we’ve conducted 2 crowdsourcing challenges seeking input regarding which preventive, diagnostic, and treatment approaches work best for patients, based on their needs and circumstances. The feedback we receive will be used to design comparative clinical effectiveness research studies.
At Scientific Sessions 2016, held in mid-November in New Orleans, we launched My Research Legacy — a new strategic business relationship with the Broad Institute of MIT and Harvard to create a secure online network designed to put the patient in the center of research. Through My Research Legacy, patients and consumers will be recruited to donate their lifestyle and genetic data and participate in scientific research. Specific scientific studies will be initiated — using the power of patient and consumer data while leveraging digital, social and mobile technologies — to solve critical problems related to treating heart disease, stroke, and vascular disease, along with maintaining cardiovascular health. My Research Legacy is currently initiating a pilot study to engage 2000 people between the ages of 21 and 50 who have suffered a heart attack, stroke, atrial fibrillation, aortic dissection, or systolic heart failure/cardiomyopathy. The pilot will establish a participant registry that allows people to choose to contribute critical data spanning biometrics, genomic, wearable and behavioral information, and medical history as examples. We will also soon begin the process of recruiting more broadly for My Research Legacy. Our vision for the Institute for Precision Cardiovascular Medicine is to gather, harmonize, and analyze cardiovascular data on a scale that has never before been possible to enable new insights critical to personalizing the prevention and management of heart disease and stroke. Here are 4 key areas in which cardiovascular scientists and other members of the healthcare community can help to fulfill this vision:
By identifying specific genes that place people at higher risk for cardiovascular diseases and stroke which can revolutionize the future of cardiovascular treatment and care.
By uncovering important trends by analyzing the vast amounts of available shared data from volunteers in populationwide studies, cohort studies, and ongoing DNA research efforts.
By sharing and aggregating big data to uncover patterns, including genetic, behavioral, and environmental influences that can save lives today and in generations to come.
By enhancing existing technologies to gather and dispense real-time feedback and input from patients.
Our first foray into the precision medicine arena was built around CVGPS (the Cardiovascular Genome-Phenome Study). The American Heart Association spearheaded this collaborative effort 2 years ago to accelerate the future of cardiovascular medicine.
Also at this year’s Scientific Sessions, we announced the Precision Medicine Platform — a global, secure cloud-based data marketplace we’ve created with Amazon Web Services to revolutionize how researchers and clinicians analyze patient data and apply it to the development of meaningful healthcare solutions. The Precision Medicine Platform integrates data from clinical trials, long-running epidemiologic studies, clinical registries, and real-time health data acquired through wearable devices and technology. Several leading healthcare and research organizations participate in the launch of the platform by contributing their data, including: AstraZeneca, Cedars Sinai Heart Institute, the Dallas Heart Study, the Duke Clinical Research Institute, Intermountain Medical Center Heart Institute, the International Stroke Genetics Consortium, and Stanford Cardiovascular Institute. We will continue to add additional data sources in the coming months.
And, in October we announced Dr Calum MacRae of the Brigham and Women’s Hospital in Boston as the winning leader for One Brave Idea, a 5-year, $75 million research program focused on preventing or reversing coronary heart disease (CHD). Dr MacRae will lead a dynamic and multidisciplinary team of experts to conduct a multiphased research project to uncover new genetic, molecular, and cellular markers associated with CHD which could be used to screen the population at large to identify individuals at risk of developing CHD later in life. The project will start with a study to collect genomic information, lifestyle data (sleep, activity, and stress), key public health data (environmental and economic factors), and responses from people with coronary heart disease in their families. This data will be cross-referenced against data from large studies, like the Framingham Heart Study and the Million Veterans Program, to validate novel traits that may be associated with the onset of CHD. In the next phase of the project, Dr MacRae and his team will develop and implement new screening approaches to identify individuals at an early age that may be at risk of developing CHD. In the final phase of the research, Dr MacRae and his team will focus on developing novel preventative or predisease therapeutic strategies with the ultimate goal of reducing the burden of CHD. New models for research, and novel preventive medicine strategies, like those to be developed within One Brave Idea, are essential for us to accelerate our work in reducing the burden of cardiovascular diseases and stroke for all Americans.
In the months ahead, we look forward to providing further updates on the Precision Medicine Platform, One Brave Idea, My Research Legacy, and other critically important efforts to develop better treatments and improve patient outcomes through precision medicine.
Dr Houser serves as President, American Heart Association.
Circulation is available at http://circ.ahajournals.org.
- © 2016 American Heart Association, Inc.