The Obama Administration has announced new commitments to its precision medicine initiative (PMI) that it unveiled six months ago.
The initiative, which President Barack Obama touched on in his State of the Union address in January, 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.
This week, the Administration launched new commitments, which include:
Guiding Principles for Protecting Privacy and Building Trust: The White House is unveiling draft PMI guiding principles that seek to build privacy into the design of the PMI research cohort, which will include one million or more Americans who agree to share data about their health. The White House is seeking public feedback on the privacy and trust principles online through August 7, 2015.
New Tools for Patients: In collaboration with federal partners, the Department of Health and Human Services Office of the National Coordinator for Health IT (ONC) and Office for Civil Rights (OCR) will work to address barriers that prevent patients from accessing their health data. OCR will develop additional guidance materials to educate the public and health care providers about a patient’s right to access his or her health information under the Health Insurance Portability and Accountability Act (HIPAA).
Research Awards to Unlock Data Insights: The Department of Veteran Affairs (VA) is announcing awards to support four research projects on key questions relevant to precision medicine using the rich data from the Million Veterans Program (MVP), the largest U.S. repository of genetic, clinical, lifestyle and military exposure data.
Additionally, private sector commitments related to the initiative launched this week include:
Duke Center for Applied Genomics and Precision Medicine: Duke has developed a platform called MeTree that helps individuals have challenging but necessary conversations with loved ones and care providers about family health histories, so that physicians can tailor care to patients’ unique risk profiles.
Flip the Clinic: Flip the Clinic, a project of the Robert Wood Johnson Foundation, is announcing a collaboration with more than 160,000 clinicians and staff practicing at sites across the United States, who have pledged to inform patients about their right to get digital copies of their medical records.
Genetic Alliance: Along with collaborators, such as Cerner, Genetic Alliance is launching new capabilities for Platform for Engaging Everyone Responsibly (PEER), a data registry that empowers participants to share their data with medical researchers, advocacy groups, and others.
GetMyHealthData: The GetMyHealthData campaign is pledging to help thousands of consumers over the next 12 months access and download their own clinical health data, so they can use it to understand and improve their health, their care, and the system as a whole—including donating their data for research.
Sage Bionetworks: Recognizing the importance of health-data liberation, and the role of data in driving research studies, Sage Bionetworks is announcing that it will support clinical studies that import electronic health-record information to its open source research platform and that it will release open-source informed-consent prototypes to support these studies.
The White House also is honoring "Champions of Change" in precision medicine, which includes nine individuals who are working to use data and innovation to improve healthcare.