The White House Precision Medicine Initiative Begins To Take Shape


During his 2015 State of the Union Address, President Obama unveiled a new Precision Medicine Initiative that would be funded with $200 million and given the mission of advancing the way that a broad set of diseases are detected and treated. Based on years of evidence suggesting that treatments for diseases like cancer and certain mental health conditions may be more effective if tailored based on individual genetic traits, the funding will be distributed to public and private organizations engaged in research that will yield new findings in these areas.

This week, after a year of recruiting public and private partners to join in on the mission, the White House announces a number of tangible commitments from organizations interested in participating, with a strong representation of digital health companies among those listed.

Google life sciences business unit, Verily, has been awarded a grant by the National Institute of Health to work with Vanderbilt University to recruit participants for the initial cohort of what will become a 1 million person long-term research study. This study, which sits at the heart of the Precision Medicine Initiative, will attempt to measure in as much detail as possible biological changes within the cohort as the group ages and experiences various health issues. ONC will work with Allscripts, Athenahealth, Cerner, Drchrono, Epic, and Mckesson to create functionality in EHR and patient portal systems that will allow patients to donate their own medical data to research in support of the project and other research efforts. Surescripts will also join this effort, providing the Precision Medicine cohort members a method of submitting an accurate medication history. ONC also announces that it will work with the National Institute of Standards and Technology to develop a Cybersecurity Framework specific to the Precision Medicine Initiative.

A core tenet of the Precision Medicine Initiative is that “health data is portable, that it can be easily shared between providers, researchers, and most importantly, patients and research participants.” To this end, a number of organizations are working to improve overall interoperability and patient access to medical records. The Advisory Board Company has committed to developing standardized APIs for five pilot organizations building applications with the FHIR framework. CHIME will work with OpenNotes to expand patient access to provider notes within patient portals. Intermountain  Healthcare is partnering with Syapse to provide patients access to cancer genomic data within a patient portal.

In total, more than 40 private organizations have joined the call for participation, though many, especially those in the digital health space, are advancing interoperability and cybersecurity efforts that were well underway before the Precision Medicine Initiative was announced. A minority of the newly announced commitments involve efforts directly related to expanding the use of genetic-based treatment plans.

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