Unleashing the Power of Personal Health Data

Mark Scrimshire is part of the Entrepreneur-in-Residence (EIR) program at the U.S. Department of Health and Human Services (HHS). The program brings together talent from within and outside government to tackle high priority issues in health, health care, and the delivery of human services. This is Mark's first blogpost in this EIR series documenting his project and experience.

I was reading Allyn Moushey's recent post on the HHS IDEA Lab blog: Innovation for Everyone - Findings and Recommendations on Harnessing Technology for Underserved Populations. It got me thinking, which I know is a dangerous thing to do! First, let me provide a little context. The journey that brings me to my current role as Entrepreneur-in-Residence at the Centers for Medicare and Medicaid Services (CMS) has been a long one. I am here to take up the challenge to build a next generation BlueButton service for Medicare beneficiaries. For those that are unfamiliar with BlueButton: BlueButton was a landmark service implemented in 2010 at the Department of Veterans Affairs (VA) and at CMS. For the first time, it enabled patients/beneficiaries to download their health information and use it as they saw fit. In classic Internet fashion, a simple solution, a text file, has kickstarted an industry. My motivation to take on this big challenge has roots in my mission to promote patient empowerment and engagement. From day one, I saw the power of BlueButton to transform the patient experience in negotiating the health care system. How can a person be empowered to make decisions without the data to inform those decisions? BlueButton cracked open the door and millions of patients have taken advantage. So how does this tie back to Allyn's post on harnessing technology for underserved populations? For too long patients have been an underserved population. That is finally changing. We are on the cusp of a transformation in the industry. A change that has been fueled by the drive for open health data. When patients can receive their health information in a form that they can reuse, a whole world of possibilities open up. Patients don't want their data for its own sake. They want their data so that it can be put to use for their benefit, or the benefit of others that they care about. The next generation of BlueButton services will fuel this change. It will enable innovators to build new services for patients. Services that empower patients to take charge of their own health. Data can be "mashed up" from their doctors, pharmacies as well as from sensor devices, their smartphones and even their genomic data. This is the vision laid out in the President's Precision Medicine Initiative with the patient at the center. Let me give you an example of why this can be important: We now know that our genome can impact the effectiveness of a drug. When we bring together our genomic data, with our prescription medications and any over the counter drugs or vitamins we are taking and merge that with data from wearable devices, it could help tailor a drug regime that is optimized for us as an individual, even to the point where it is targeted to the best times of day to take a drug based on our activity profile. Before we can fulfill the vision of Precision Medicine, we need to implement some basic building blocks. We need a patient-centered information fabric that allows patients to bring together the information they need and share it with the people, applications and services that they trust. Building a next generation BlueButton service is one of those building blocks. It is more than a service. It can be a model for other organizations to adopt and adapt for the benefit of patients. For me, the call to service as Entrepreneur-in-Residence is a chance to apply my skills to advance the cause of patient empowerment by unleashing the creativity of thousands of entrepreneurs and innovators. So, while working on designs internally I will also be talking with developers and entrepreneurs to get them ready to take advantage of the new BlueButton data services we are building. Encouraging them to create new applications and services that will benefit patients and consumers. If you are interested in the work that CMS is doing to update BlueButton, watch out for more tweets and articles on #BBonFHIR. Information and code will be posted on the HHS IDEA Lab Github account while you may find early prototype work at https://github.com/ekivemark HHS EIRs are brought on for a fixed period of time to leverage their skill-set to develop solutions while also bringing new skills, experience and capabilities to HHS. Learn more about the EIR program.