Care Transformation Center Blog

Join us in driving advances in interoperability and personalized medicine

by Brandon Weaver and Jonathan D'Souza

We’ll admit it: sitting at the White House, listening to the President discuss the finer points of medical research and data science is not somewhere we would have expected to be. And yet there we were, attending the Precision Medicine Initiative (PMI) Summit last week at the White House, surrounded by a diverse group of individuals and organizations leading the charge to drive faster, more effective medical discoveries.

President Obama launched PMI in his 2015 State of the Union speech as a means of supporting the emerging approach for disease treatment and prevention that takes into account individual differences in genes, environment and lifestyle. And not surprisingly, accessible and affordable sharing of clinical and social data lies at the heart of this effort, in addition to other targeted initiatives like establishing a million-patient research cohort to enhance scientific discovery. (For an overview of PMI, check out The Atlantic’s video report on last week’s event.)

Our commitment to improving information sharing

Last week’s Summit not only celebrated PMI’s first year accomplishments but announced its clear mission moving forward. The excitement and deep commitment of the attendees, including the President himself, were readily apparent and it was a proud moment for the Advisory Board as we joined over 40 other organizations making specific commitments to contribute to the effort.

Listening to the patients, veterans and physicians speaking at the event reminded us of an important fact that we already know—the future value and quality of our health care treatments relies heavily upon the ability to ensure the seamless and appropriate sharing of data.

Seeing the commitment of these groups, including many Advisory Board members, leaves no doubt that progress will be made in both the public and private sectors. Our own commitment builds upon our work over the past few years to facilitate the development of application programming interfaces (APIs) based on the emerging fast health care interoperability resources (FHIR) standard.

As a participant in PMI, we will develop pilot programs with up to five provider organizations to help deploy the FHIR API so that they can develop applications the will ease information sharing for both providers and patients. At the end of the pilot, the results will be publicized to help others deploy similar data-driven tools. If your organization is interested in participating, email my colleague Eric Emrey at

As a close partner to provider organizations—large and small—in communities across the country and beyond its borders, we see how hard the health care community is working to advance the use of information technology in everyday care. And we also see them struggle to overcome the technical and cultural barriers that can sometimes complicate the best of intentions. But we know that collaboration and dedication can overcome these challenges, which is why we have been early participants in initiatives like SMART and Project Argonaut. As we listened to the passionate discussion at last week’s PMI Summit, we noted the following key points:

Personalized medicine supported by industry and policy leaders

Personalized medicine, including all of its research and health IT components, is strongly supported by both public and private sector leaders. This broad support was clear at the Summit, which brought together a range of stakeholders including individual patients, clinical researchers, providers, technology experts, vendors, and government officials, including the President himself. Each expressed strong support for PMI and high expectations for its impact. The groundswell of support could very well be an inflection point on the path to interoperability.

Personalized medicine inextricably linked to interoperability

While the President didn’t specifically use the term "interoperability," his comments and those of many other participants clearly articulated a fully interoperable health IT infrastructure as one key to the success of PMI. And many health care industry leaders participating pointed to more personalized care as one of the ways that patients will benefit from investments in interoperability.

Deploying personalized medicine requires coalition of stakeholders

It’s not enough for academic medical centers to participate in research and implementation of personalized medicine. Last week’s Summit highlighted how important (and challenging) it is to broaden the initiative to providers beyond academic institutions to settings like community hospitals and physician offices. This expansion will be key to ensuring that advances are widely adopted and the benefits are maximized.

Smart pilots and knowledge sharing critical to accelerating change

It’s clear that the aims and timetables laid out under PMI are ambitious. Achieving the program’s aims will require serious industry collaboration around well-designed pilots and then rapid dissemination of the learnings—both good and bad—from initial efforts. This is why we are committed to publishing best practices from our pilot. Similarly, other organizations have included a knowledge sharing component in their commitments (e.g., Picnic Health is developing a guide for patients to use in accessing their medical records).

Translating data into actionable insight as important as research

Everyone at the Summit acknowledged the overwhelming amount of data and the challenges helping patients and physicians make sense of it. Helping patients find “access with a purpose” to their data will be critical to sustain patient participation in research over time. And providers need data that is timely and actionable so that they can minimize distractions from caring for patients.

Potential gains from better processes and EBM adoption substantial

Often, conversations about personalized medicine default to development of personalized drugs. The discussion at the Summit, however, also highlighted the opportunities for PMI to generate improvements through refining processes and helping providers adopt evidence-based medicine.

Ready to partner with us?

We would love for your organization to join us in the effort to achieve greater innovation in health care treatment and disease prevention—whether it’s as one of the five organizations working with us to test FHIR-enabled APIs or through partnership with another of the organizations that announced a commitment last week. The critically important mission of personalized medicine and efforts like PMI will only be achieved if all of us are willing to roll up our sleeves and work together to build the 21st century health care community that our patients deserve.

If your organization is interested in participating, email my colleague Eric Emrey at

Get a free excerpt on personalized medicine

Personalized medicine is a fast-moving field, and it raises questions about how to adapt today’s care delivery model to accommodate the next generation of therapies. Learn one key lesson your organization should implement.