White House Champions of Change in Precision Medicine: Duke's Commitment

Today I had an opportunity today to attend a White House event highlighting work in the field of precision medicine. I was joined by my colleague Geoff Ginsburg who directs the Duke Center for Personalized and Precision Medicine (video replay here, with Geoff's comments at 2:08:30). As part of the event, Duke was highlighted for our commitment to precision medicine. This was for two reasons:

• The innovative MeTree platform created by Geoff, Lori Orlando and the rest of the MeTree team. This platform provides a way for patients to work together with their doctors to improve the recording of their detailed family health history - information that is critical to the success of precision medicine.
• The fact that the MeTree platform will be integrated into our Epic-based EHR using SMART on FHIR. Duke is an "Implementer" of the Argonaut Project, and was the first health system with an Epic-based EHR to run unmodified SMART apps directly (see our HIMSS demonstration video here).

As I've said elsewhere, we're on the verge of a renaissance in healthcare technology modularity and interoperability, led by open and familiar standards. The same principles that have led to the successful mobile app ecosystem are being applied to healthcare, with the result that many more innovators will have access to tools that allow them to build EHR-compatible apps. The problems in healthcare are enormous, and the more brilliant minds we have focused on these problems, the more likely it is that we'll find compelling solutions, and soon.

Geoff shared a few comments with the group at the event today, which I've shared here with his permission:

Good afternoon. My name is Geoff Ginsburg and I direct the Duke University Center for Applied Genomics and Precision Medicine. 

It is an honor for our work to be recognized at this Champions for Change for Precision Medicine event. I want to acknowledge up front the support of the Duke Health System, of my colleague Ricky Bloomfield (Director of Mobile Technology Strategy and hospitalist at Duke) who is in the audience and of Lori Orlando (a health services researcher and internist at Duke) who could not be here today but who has been key to the development of this idea and making it real. 

Today we are announcing the development of a platform that will make it easier for the patient to provide information about their family history to their provider and for providers to access family history and risk information to better care for their patients
 -- information that is critical to precision medicine. 

Several years ago we recognized that family history is fundamental to optimizing effective clinical approaches to personalized and precision medicine. However, our research showed that seldom, if at all, was a patient’s family history captured and adequately documented by providers. Furthermore, when histories were taken, there were challenges in interpreting the risk information in a multigenerational family history.

How many of you in the audience have had a truly detailed family history taken by your doctor and learned something from the results?

To address this challenge we created a patient facing, web-based, evidence based software platform to capture family health history – called MeTree. Patients talk to their families and loved ones about what illnesses family members have had and their age of onset and enter the information via the web into our software platform. The information is used to calculate risks for developing disease and the results are reported back both to the provider and to the patient creating an effective provider-patient interaction about their hereditary health risks and what to do about them. 

Two years ago we were fortunate to be funded by National Human Genome Research Institute to expand the reach of this platform to five different health systems across the country representing a variety of care environments and demographic groups. 

Now thousands of patients are learning about their family history of disease and using that information with their providers to get appropriate screening, genetic counseling and testing and taking actions to enhance disease prevention. 

Duke is pioneering the use of open, vendor-neutral standards espoused by the Argonaut Project. These standards will be in place by year’s end to enable this platform to be integrated into multiple patient portals and EHRs, which will allow will near universal accessibility of family history information to patients and providers seamlessly --  improving shared decision making related to prevention of inherited disease. 

With commitment comes responsibility. We will now get to work to honor this commitment to the President and to our patients. It is our hope that this work will help facilitate many more innovations from health systems and technology companies in the future so that we can realize our shared goal of higher quality and more cost-effective healthcare in our country.