On the anniversary of the launch of the Precision Medicine Initiative, the White House hosted a summit to outline key actions being taken so far to advance the initiative, including a number of announcements and commitments from health IT stakeholders.
President Obama’s initiative aims to pioneer a new model of patient-powered research to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients. The $215 million investment will provide the National Institutes of Health (NIH), together with the Food and Drug Administration (FDA), and the Office of the National Coordinator for Health Information Technology (ONC) support for various projects.
The event on Thursday recognized the efforts of federal agencies, companies and non-profit groups to advance precision medicine.
One of the key goals of the NIH is the PMI Cohort Program, a landmark longitudinal research study of 1 million or more volunteers to expand understanding of health and disease. According to Francis Collins, M.D., NIH Director, in a press statement, the agency’s goal is to enroll 79,000 cohort participants by the end of 2016 in order to gather data on 1 million participants by the end of 2019.
In alignment with the goal of gathering health data from 1 million Americans, NIH announced it was awarding the Direct Volunteers Pilot Studies Program to Vanderbilt University, Nashville, Tennessee, in collaboration with advisors from Mountain View, Calif.-based Verily (formerly Google Life Sciences), to “explore the optimal approaches and systems for engaging, enrolling, and retaining participants from across the United States in the PMI Cohort Program. “Volunteers in the pilot will help the research team establish and test innovative methods and technologies for enabling robust participant engagement, as well as user-friendly data collection,” Collins stated.
NIH also will work with ONC on a program called “Sync for Science,” which will pilot use of open, standardized applications to give individuals the ability to contribute their data to research, including for the PMI cohort when it is launched. According to Collins, these pilots will demonstrate a new model of research that enables participants to access their electronic health records (EHRs), control and manage their data, and coordinate their care among their health care providers.
As previously reported by Healthcare Informatics’ Contributing Editor David Raths, Josh Denny, M.D., a member of the PMI Working Group, detailed the required infrastructure of the PMI in order for individual participants to gather and send their health data to the PMI.
“We envision Sync for Science as a broader ‘view, download and transmit’ tool that would allow a patient to have their EHR data from a given provider link to another resource, which could be PMI, and as new data accrues in that health system, that data could be synced up to PMI,” Denny said. “Participants would be in control of what those links are, and of course have the ability to cancel the links over time.”
The College of Healthcare Information Management Executives (CHIME) also announced a partnership with the OpenNotes team to bring greater awareness of the note-sharing movement and other patient-facing technologies to CIOs and other health IT leaders. The collaboration was announced as part of the PMI Summit.
As part of the PMI, the Patient-Centered Outcomes Research Institute (PCORI) announced an initiative to help individuals access data in their electronic health records (EHRs) and share it with researchers.
The Healthcare Information and Management Systems Society (HIMSS) pledged it support and commitment to “engaging and education the health IT community of PMI.
“HIMSS pledges to engage over 60,000 health IT stakeholders—including technology companies, hospital leaders, researchers and healthcare innovators—at HIMSS16, the Connected Health Conference and our other national, regional, chapter-level, and virtual education events to advance precision medicine. Activities will include a precision medicine policy and technology meeting at HIMSS16 and a thought leader discussion in March in Washington, DC, to discuss and provide feedback on security guidelines for precision medicine,” the organization said in a press statement.
Another NIH initiative includes collaborating with the Health Resources and Services Administration (HRSA) to begin partnerships with several Federally Qualified Health Centers to develop, pilot, and refine approaches for bringing underserved individuals, families, and communities into the PMI Cohort Program, especially those historically underrepresented in biomedical research.
Collins referred to the PMI Cohort Program as the “the largest, most ambitious research project of this sort ever undertaken, which truly has the potential to transform how we understand — and how we approach — the health and wellness of families, communities, and individuals.”
“In the coming months, the remaining foundation will be put into place to carry the program’s success over the next four to five years and help us reach one million participants by the end of 2019. This includes establishing the coordinating center to manage the overall project including the many moving parts and activities that will be required; a network of healthcare provider organizations, which will engage, enroll, and support ambitious data collection for a large segment of the program’s participants; a biobank to store and manage biological specimens provided by participants; and a participant technologies center to harness the latest opportunities in mobile phone and sensor technologies in order to assess health outcomes and various influences on health with greater precision than in previous cohort studies,” Collins stated.