Precision Medicine: A One-Year Update
By DJ Patil, Chief Data Scientist in the White House Office of Science and Technology Policy, and Stephanie Devaney, Project Manager of the Precision Medicine Initiative
A year ago, President Obama brought together experts in medicine, science, and technology to announce the creation of the Precision Medicine Initiative (PMI), with the bold goal to accelerate biomedical discovery and give clinicians new tools, knowledge, and therapies to tailor treatments to individuals.
Most importantly he included patients like Elana Simon — a college student, cancer survivor and cancer researcher — to emphasize that in every aspect of PMI, individuals of all backgrounds will be partners and collaborators.
Since then, we’ve been humbled by incredible support from across the country to move aggressively forward on the President’s vision. While we’re far from done, we wanted to take a quick moment to highlight how your input has translated into action:
- The National Institutes of Health has taken substantial steps to build a new research cohort of one million or more participants. It will be open to all Americans, created in collaboration with participants, and support research to develop more effective ways to prolong health and treat disease.
- The Department of Veterans Affairs has enrolled more than 400,000 veterans in the Million Veteran Program, a research program that aims to improve the health of our veterans by linking genetic, clinical, lifestyle and military-exposure information, with the goal of learning more about the role of genes in health and disease.
- The Food and Drug Administration is modernizing its next-generation sequencing (NGS) regulation and in December launched PrecisionFDA, a platform for data-sharing to improve the accuracy of NGS testing.
- The Department of Health and Human Services, Office for Civil Rights, released new guidance clarifying patients’ right to access their own health information in the format of their choice.
- The White House released PMI Privacy and Trust Principles, developed with extensive public input, to make clear that protecting privacy and building participant trust are fundamental tenets of PMI.
- The Department of Defense is working with VA to coordinate efforts around precision medicine and the Office of the National Coordinator for Health Information Technology is developing data and technology standards to facilitate precision medicine analyses.
Even with this incredible progress, we’re far from done and in his final State of the Union Address, the President re-emphasized his commitment to this important initiative in the upcoming year.
This effort requires an all-hands-on-deck approach, so as we continue the Federal Government’s work, we know that the work you are doing is just as important. Now it’s time for communities to play a vital role in making the President’s vision a reality.
We’re calling on you to demonstrate how you are breaking data silos and sharing data to speed research. To further this initiative, communities and organizations can share your lessons about engaging patients more deeply and actively in research. You can also bring your community together around a shared vision of a healthcare system that can offer tailored treatments and prevention to every citizen, informed by research.
We know that important work like this is already underway. States are teaming up with industry and universities to drive economic development and new jobs that will further the President’s vision of individualized treatments for every American. New partnerships among universities, pharmaceutical companies, and patient groups are accelerating progress to find new cures.
Now it’s your turn to bring the conversation about this approach to medicine to your community! If you or your organization is interested in hosting a precision medicine event in your community, tell us about it here.
These events will be a great opportunity to demonstrate deep collaboration across government, industry, academics, patients and delivery systems. It will also help to spark local innovation and entrepreneurship around precision medicine and digital data and create new action to achieve the priorities and values of our collective precision medicine efforts, including:
- Making it easier for patients to access, understand, and share their own digital health data, including donating it for research
- Engaging participants as partners in research, including returning results to them in dynamic, user-centered ways
- Adhering to strong privacy and data security principles
- Reducing disparities and brings the promise of precision medicine to everyone
- Opening up data and technology tools to invite citizen participation, unleash new discoveries, and bring together diverse collaborators to share their unique skills
In 2010, the President signed the Affordable Care Act into law to ensure that all Americans will have access to healthcare. Now, in the final year of this Administration, we are laying the groundwork for a healthcare system that truly can deliver the right treatment at the right time.
Want to get involved?