Responding to the White House Precision Medicine Call to Action

I'm fired up! Brian Deese, Senior Advisor to President Obama (and "cash for clunkers” champion) inaugurated Wednesday's champions of change event honoring nine precision medicine voices with a challenge - "It should be as easy to compile, access, aggregate and share your data as it is for me to buy a plane ticket from here to Beijing in 30 seconds on my phone.”

He then issued a call to action, building on five private sector commitments to help patients access, share and potentially contribute it for research, to quadruple the number of pilots in the coming months. The empowerment theme carried throughout the day as NIH Director Dr. Collins noted, "we don't think of them as patients, but as participants."

So how will we respond to this call to action? Can we recruit 20 commitments in 90 days? I’m “all-in” and would love for any of you to join these growing coalitions to: 

1) Activate patients. The “Get My Health Data” and PEER campaigns are underway to engage patients in methods to access and control their electronic health records; both campaign offers a "one stop shop" for what you need to request, share or donate your data for research and would welcome more partners. For context, my brother, Dr. Farzad Mostashari, explained the movement on (Data) Independence Day.

2) Activate providers. The latest Flip the Clinic ("Flip 55”) campaign will reach an estimated 20 million patients through 160 thousand clinicians by (gradually) shifting culture towards delivering electronic copies of patient data; the impressive roster of inaugural partners includes national provider groups like Almost Family and Trinity Health, as well as regional leaders like Inova, UNC, UMKC and a growing roster of physician clinics. Tech partners like Epic and text4baby round out a fast-growing coalition.

3) Activate developers. The HL7 Argonaut Project, a code and documentation sprint, will support organizations seeking to participate in a (free) testing program for developers keen to build apps on healthcare's open API for patient summary data (FHIR profiles mapped to the MU common data set) accessible via OAUTH.

First to commit to build such an app for consumers? Duke, with its MeTree app that helps calculate risks based on combining detailed family history with EHR data. Such an app would meet the spirit of the proposed MU3 regulation which would empower patients to designate a trusted app of their choice to access and use their health data, as envisioned in the Argonaut use cases.

This is our time. We can fix our healthcare system and build a robust, interoperable infrastructure that treats patients as participants, not form-fillers for consent. Sign up for the coalition that appeals to you, and feel free to connect with me on LinkedIn.