Partners institutions are leaders in hospital-based federally funded medical research, with nearly $730 million from the National Institutes of Health (NIH) alone in 2015. Research is a key element of the overall Partners mission, in addition to patient care, education and community health.
“Having research as a part of our mission offers important societal and patient benefits,” said Partners President and CEO David Torchiana, MD. “Offering our patients access to the latest advances in medical treatment is dependent on allowing our researchers to better understand and fully appreciate the clinical applications of new developments.”
Integrating research and clinical care. At Partners, there’s a perfect storm brewing that could bring to reality the vision of personalized or precision medicine. Its elements include Partners eCare, the Partners Biobank and the Partners Big Data Commons—a data platform anchored by the Partners Research Patient Data Registry.
Partners Chief Academic Officer Anne Klibanski, MD, said the key to pulling these elements together is the robust electronic health record (EHR) that Partners eCare offers. “We have been able to integrate a number of initiatives and research tools through the Partners Big Data Commons. For example, patients who have enrolled in the Partners Biobank are linked to their health care data from the EHR and other research data—things like information on lifestyle, environment and family history. We’re getting ready to include imaging information in the Big Data Commons as well.”
An added bonus comes in the form of genomic data that further links research with patient care. Last year, investigators across Partners institutions, in collaboration with the Broad Institute, received two four-year grants totaling $12.3 million from the NIH as part of the Electronic Medical Records and Genomics (eMERGE) network; grantees will study approaches to combining genomics and EHRs such as Partners eCare. Researchers will analyze genetic data from the 25,000-plus samples in the Partners Biobank, looking for variants that could impact clinical diagnostics and care. The study will also evaluate how this information can be provided to patients and their physicians so it can be used to support diagnosis, treatment and even prevention.
“This could include anything from identifying when a patient might be a candidate for a specific therapy to identifying when a genetic variation might result in adverse effects from a proposed therapy,” said Klibanski.
Direct patient engagement: The new research frontier. In the past, patients were contacted by their primary care physician (PCP) if they were eligible to participate in a research study. (Even before this step, the researcher had to contact the PCP, explain the study being conducted and ask if any of his or her patients might be eligible.) Occasionally, highly motivated patients might search the internet to find out about clinical trials for which they might be eligible.
All that will change with Partners eCare. When the new system is fully implemented across Partners, patients will have access to a research portal where they can enroll to be contacted by investigators working in areas that relate specifically to them. In addition, patients may be able to help define what some of the endpoints of a research project might be.
“Having patients’ perspective—knowing what would be meaningful to them as an outcome of a research project—is new and exciting territory,” said Klibanski. “Our capabilities in so many areas, including bioinformatics, genomics, data analytics and IT, are escalating rapidly and converging.”