Next Steps in Developing the Precision Medicine Initiative

The President’s Precision Medicine Initiative (PMI) is dedicated to enabling a new era of medicine through research, technology, and policies that will lead to the development of individualized, tailored treatments for patients. This vision will allow everyone to become an active participant in scientific discovery – furthering an open and inclusive model for better recruitment of and partnership with research participants. Why is this so important? We have seen incredible innovations in health care, and central to many of those advances have been people participating in research. PMI will provide the foundation that allows all Americans to sign up and share their data in a safe and responsible way, leading to scientific breakthroughs that will ultimately pave the way to better options for patients.

And that’s why we want to hear from YOU.

In July, the White House celebrated nine remarkable Champions of Change in Precision Medicine and highlighted the efforts of organizations committed to providing more individuals with easier, more efficient access to their health data.

Hear more about the importance of this initiative from nearly a dozen researchers and advocates here.

Moving precision medicine forward must be a team effort. We need all sectors to work together. We need people to actively engage in research and voluntarily choose to share their data with responsible researchers who are working to understand health and disease. We need healthcare providers to share their insight and help translate new findings into better care. And we need a strong, secure, and nimble infrastructure for health data that protects privacy, ensures security and facilitates new research models. Leaders in healthcare must continue to work with the brightest minds from the technology sector on designing and testing new methods for opening up patient data and allowing individuals to donate their data to research. Over the course of this administration, we’ve seen incredible advances in health technology, including widespread adoption of electronic health records. Yet, there is still more work to do. Too many people are unable to access, share, or move their health data easily.

That’s why we’re looking to a broad range of stakeholders to learn about new or expanded initiatives and programs aimed at enabling new ways to improve health and treat disease – and ways to use this information to inform our precision medicine efforts going forward.

We know of exciting work in each of the key areas listed below, and are looking for additional examples of these types of efforts.  These initiatives could include:

• New approaches for deploying precision medicine into patient care to improve health.
• Exciting new ways to engage patients, participants, and partners in research, and get the word out about PMI, including through the use of novel technologies.
• The deployment of innovative ways of including historically excluded and underserved populations in research.
• The development of robust APIs in electronic health record systems that can support patients accessing their clinical data and donating it for research.
• The creation of workable models of information sharing across organizational boundaries with appropriate privacy and security protections.
• Technology to support the storage and analysis of large amounts of data, with strong security safeguards.
• Novel analytics to help combine diverse data sets with appropriate privacy and security protections to answer precision medicine questions.
• New solutions for security issues in building large research data sets.
• Steps to increase the number of high quality data scientists and technologists working in healthcare.
• The development of grand challenges, competitions, and prizes to foster innovation.

Please share any new activities that support these goals or others that advance precision medicine here by 5 PM ET on September 21, 2015. With support from patients, research participants, researchers, providers, and private sector innovators, we can make precision medicine a reality. We need your creativity, on-the-ground experience, and enthusiasm to realize the promise of delivering individually tailored treatments to patients. Visit the White House Precision Medicine website to share your experience and help with this important initiative. We’re listening.

Stephanie Devaney is Project Manager for the Precision Medicine Initiative.