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Scaling Patient Engagement and Data Interoperability by Design

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by Eric Dishman, Intel Fellow and General Manager of Health and Life Sciences for Intel

As a cancer survivor, a kidney transplant recipient, and a patient advocate for more than 1200 families dealing with cancer, my personal experience has made me well aware that I am a lucky to be alive. I am an early prototype for the lifesaving potential of accessing your own health data and genome-based precision medicine.  Over the 25 years since my diagnosis, it was a fight to be heard as a proactive patient trying to own my own health. It was a fight to get access to my own data, even with laws that claimed I should be able to. And it was a fight to understand what this new thing called a Whole Genome Sequence really meant for my care. Thankfully, those fights paid off, or I would not be typing this today. But too many of my friends and colleagues who didn’t have the energy, means, or know-how for those fights are no longer with us.

As a social scientist studying doctor/patient interaction in grad school, now as an executive leading Intel’s Health & Life Sciences Group, and recently as a member of the President’s Precision Medicine Initiative Working Group, my professional life has made me well aware that deep patient engagement and full data interoperability are prerequisites for true healthcare reform. If we are to deliver better quality care and access to care for more people while reducing costs, we have to finally make the buzz phrases of “data interoperability” and “patient engagement” real. If citizens can’t access and understand data about ourselves, then we can’t own our own health.  And if citizens can’t start owning our own health—in partnership with our team of clinicians, friends, and family members—then the behavior change and preventive care paradigms everyone knows are the keys to sustainable healthcare will not happen.

On September 16th I am honored to share my personal experience, my professional experience, and Intel’s recent work on “Precision Health” during the US Senate Committee on Health Education, Labor and Pension’s hearing “Achieving the Promise of Health Information Technology:  Improving Care through Patient Access to Their Records.” I will discuss why each of us needs to work with our care teams to build care plans, with goals and accurate tracking and to own our health and our health data — but the healthcare systems need to do a much better job of giving us the tools—and expectations—to do so. I will focus on two big ideas.

Start with patient engagement by design: Our healthcare system today by and large does not know how to deal with proactive, data-carrying patients like me because it was never designed to do that. Thus, it rarely considers how to include a proactive patient when designing workflows, exam rooms, quality metrics, software, financial rewards, expectations, and training. There are now pockets of innovation and great pilots exploring “patient engagement,” but so far most efforts appear to be bolted on to an outdated relationship between clinicians and patients that cannot scale. We need to more fundamentally change the social contract and infrastructure for how an engaged patient interacts with the system to achieve two-way data exchange and two-way responsibility for care. First and foremost, this is a change of mindset and responsibilities for both clinicians and consumers that needs new infrastructure & policies to support it.

Drive secure shareability of diverse data types:  Our healthcare system today is going to great lengths and investments to move clinical information into EHRs. But as we move towards Precision Medicine—or what I prefer to call a “Precision Health” model—we must expand and diversify the data types, owners, and generators of what we think of as health data. Four major categories must be brought together to deliver an individualized, precise treatment or prevention plan: 1) clinical/claims data; 2) diagnostic/device data; 3) omic data; 4) consumer generated/mHealth data. Securing the ability for individuals and institutions to safely, affordably decide who gets access to this broader dataset is crucial. And with imaging, genomic, and consumer electronic device and smart phone data beginning to scale, we should start with commitments to—and validation of—interoperability standards from the outset so we do not recreate the problems seen with traditional EHR data.

While I was lucky enough to bring together my own clinical, imaging, genomic, and wearable data to help my doctors discover the right treatment and to take back my health, it is not easy to do so today.  Intel teams have been driving a range of programs to help demonstrate to ourselves and the world how to make it easier and more affordable to integrate these diverse data sets and big data analytics needed to drive precision health. All of our efforts are built upon the principles of data interoperability and patient engagement. In my testimony, I will include the following case studies:

  • Intel’s Connected Care Program, an employer ACO making EHR data secure and fluid between our providers and employers

  • Our collaboration with the Michael J. Fox Foundation (MJFF) to improve research and treatment for Parkinson’s disease by capturing unprecedented data types from wearable technologies

  • Our development of the Collaborative Cancer Cloud with Oregon Health & Science University (OHSU), enabling large amounts of data (genomic, imaging, clinical, etc.) from sites all around the world to be analyzed in a distributed way, while preserving the privacy and security of that patient data at each site

I hope these Intel case studies show the necessity, viability, and benefits of enabling a more personal, data-driven approach to healthcare for others to build upon. And that they demonstrate the possibilities of discovering and delivering potential lifesaving treatments by design, not by chance or a patient’s luck. Building a Precision Health model that relies upon proactive, engaged patients and a wide array of new data types and sources will not be an easy undertaking. As it was for me, this will be a fight, another fight, and yet another fight—but it will be worth it. These transformations will be essential to delivering a new normal for healthcare with greater access, reduced cost, and improved quality for both the one and the many.

Testimony can be found here: Eric Dishman testimony for Senate HELP Committeee 9-16-15.