Leading the way for the AHA is the Institute for Precision Cardiovascular Medicine, which is coordinating the national organization’s initiatives. The institute was launched last October and given a charter to develop a long-term plan to use precision medicine in the battle against heart disease.
In its first year, the Institute has pursued an approach where it’s serving as a convener, drawing together organizations interested in precision cardiovascular and providing grants for research.
However, the AHA has bigger ambitions to facilitate research and is looking to develop a “data discovery platform” that will enable information sharing, research and collaborate in the field.
Toward that end, the Institute is researching open-source components and looking to the cloud to support data sharing—in July, it formed a strategic partnership with Amazon Web Services (AWS). However, it’s not an exclusive relationship, and the Institute would be open to using other cloud services, such as those offered by Microsoft or Google, to promote data sharing on the scale it’s envisioning.
While the deal with Amazon is a first step, the Institute’s data platform is still very much in the design phase, says Taha Kass-Hout, an AHA strategic advisor for data and health informatics.
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The Institutes hopes to create both a social and computational infrastructure that will ease data sharing and collaboration among researchers. “We’re trying to focus on the platform as an open stack that will enable search and discovery, and harmonization of the data,” says Kass-Hout, who was the first chief health informatics officer for the Food and Drug Administration and the creator of precisionFDA, an online, cloud-based, portal that enables scientists from industry, academia, government and other partners to come together to foster innovation and develop the science behind a method of “reading” DNA known as next-generation sequencing.
Precision medicine is a fast-growing approach to disease prevention and treatment that seeks more precise care by combining scientific research with detailed information about a patient’s genes, environment and lifestyle. Key to support such efforts is collecting vast stores of health data that researchers can analyze to identify patterns and specific ways to diagnose and treat individuals.
The AHA has high hopes for precision medicine and believes building an open research platform through the Institute will increase opportunities to use personalized medicine in treating cardiovascular disease and stroke. The organization allocated $30 million over five years to launch the Institute, and a fund-raising initiative is underway to generate another $100 million to $200 million for future work.
“Tailored prevention and treatment will help patients and lessen the global burden of cardiovascular disease,” says AHA CEO Nancy Brown.
In addition to providing leadership and funding support for the development of precision cardiovascular medicine, the Institute is expected to catalyze, coordinate and integrate multiple activities across big data platforms that it hopes will lead to the generation of the new data discovery portal. And it will bring stakeholders together and serve as an “honest broker” to balance the interests of competing parties, says Brown.
In the near term, the Institute will include data from paired genotype-phenotype datasets—such as longitudinal studies and health systems biobanks—to help provide access to a large, highly diverse set of the most valuable cardiovascular data for researchers.