Its been almost six months since President Obama announced his $215 million Precision Medicine Initiative, an effort requiring the active participation of providers, researchers, and a national cohort of a million Americans who will volunteer their genetic and health data to achieve medical breakthroughs.
On Wednesday, the White House announced that federal agencies and private sector groups are stepping up to Obamas call to action. The administration says stakeholders are starting to advance initiative goals by making health data more portable; ensuring patients can access and share their own health information, including contributing it for research; protecting patient privacy, security and choice; and supporting new research platforms connecting researcher and participants as partners.
Towards that end, the White House has unveiled draft guiding principles that seek to build privacy into the design of the PMI research cohort of one million or more volunteers who will agree to share their genetic and health data. According to the administration, an interagency working group convened by the White House developed the principles. The public has until August 7 to provide comment on the proposed privacy/trust principles.
In addition, the White House has announced that the Office of the National Coordinator for Health IT and HHS Office for Civil Rights will jointly work to address barriers that prevent patients from accessing their health data.
The administration said ONC will publish sample communications tools to encourage patients to access their digital health information and workflow diagrams for providers, as well as develop an open-source prototype that will allow individuals to combine their medical records with patient-generated data and connect these data with the apps of their choice. For its part, OCR will develop additional guidance materials to educate the public and providers about patient rights to access their health information under HIPAA rules.
The White House also noted that the Department of Veteran Affairs is funding four research projects seeking to answer key questions relevant to precision medicine by leveraging the VAs Million Veterans Program, the nations largest database of genetic, clinical, lifestyle and military exposure data. These studies will also help inform plans for PMIs national research cohort, including the types of data that should be included and the design of the data platform, states the announcement.
In addition to these efforts by federal agencies, the administration highlighted several private sector initiatives, including:
Duke Center for Applied Genomics and Precision Medicine: Duke has developed a platform called MeTree that helps individuals have conversations with loved ones and care providers about family health histories, so that physicians can tailor care to patients unique risk profiles. MeTree will now connect with the information in patients electronic health records, allowing patients and providers to access information in EHRs through application programming interfaces (APIs).
Genetic Alliance: The initiative is launching new capabilities for the Platform for Engaging Everyone Responsibly (PEER), a data registry that empowers participants to share their data with medical researchers, advocacy groups, and others. PEER will accept coded, clinical data from participants EHRs. Participants will be able to send this information to PEER directly from their provider-supplied portals, leveraging national standards, or ask that their providers send it. Today, there are about 20 provider-supplied portals that work with PEER. However, this number will more than double by the end of 2015, supported with a grant from the Robert Wood Johnson Foundation.
GetMyHealthData: The GetMyHealthData campaign is pledging to help thousands of consumers over the next 12 months access and download their own clinical health data to manage health or donate for research. A collaboration of consumer organizations, health care experts, former policy makers and technology organizations, GetMyHealthData will provide a tool to automate the request for their data and to troubleshoot any problems that occur. The initiative will also offer basic guidance on apps that can safely and securely store patient data, including those that enable data donation for research while protecting privacy.
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