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Seeding the Growth of Patient Engagement through Innovative Interoperability

nurse working on a computer in her office

Dave deBronkart, better known as “e-Patient Dave,” will be providing the keynote address for the 2015 InterSystems Healthcare Leadership Conference. He spoke with PULSE recently about health information, innovation, and the role of interoperability in patient engagement.

Dave, as a champion of patient engagement, you talk about the importance of reviewing and contributing to your own healthcare record, or that of anyone for whom you manage care. Why is this so central to your message?

Because no one can perform at the top of his or her ability without the right information, at the right time and place. That applies to clinicians, to patients, and to care managers. Many of us have examples of why this is important. When my mother had a hip replacement and was transferred from the hospital to rehab, the description of her thyroid condition was somehow reversed. Had my sisters not taken the time to review the chart, in a timely fashion, and had the rehab facility not made it possible for them to do so, her doctors would have treated her incorrectly, in all good faith and based on the best information available to them. Presto: patient and family engagement improved safety and quality, at no extra cost to the system.

Patients and caregivers are an essential part of the health information quality assurance process. In my mother’s case, this was a paper-based process, but healthcare information is now becoming widely available online through patient portals.

That makes sense, but many of us are simply overwhelmed by having to review and manage many patient portals – especially if we see a number of different providers and have multiple insurers.

I refer to this as the “Seven Portals Problem” and it is an absolutely predictable phase at the birth of innovation in any new space. When banking information first became available online, early adopters, like me, had to manually download files each month about their banking, credit cards, and other financial transactions, and import them into Quicken. It took a huge effort to make it all work – you really had to be a geek. It wasn’t until financial institutions saw this as a competitive imperative and invested in true interoperability that it became viable for the average person to manage her finances online.

Geoffrey Moore has written extensively about innovation and what it takes to make the leap from workflows cobbled together by visionary early adopters to something simple, automated, and usable enough that an early majority will see it as worthwhile. We are at the edge of what Moore refers to as the chasm with respect to patient portals. The next phase of innovation - healthcare interoperability so that all of your information can be automatically available and manageable in a single place - is going to be essential to widespread patient portal adoption. Until that happens, for complex patients, portals are a pain; when it happens, the value will emerge.

Most people think of healthcare innovation as a new drug, or a new surgical procedure. You seem to be categorizing information access as a form of innovation.

That’s correct. In a sense it is like a drug, as the OpenNotes team has said – it has benefits, indications, side effects and contraindications. But Ultimately, healthcare is a complex systems environment in which opening access to new information represents tremendous innovation. Interoperability – enabling information to flow freely, and to use a common vocabulary – is essential to opening that access because it lets you assemble enough data to support a thriving ecosystem of new uses and new users.

In your new article in the BMJ, you wrote: “something has changed in the [healthcare] environment—the flow of knowledge—and it is altering what’s possible.” You were speaking specifically about creating a science of patient engagement, but you also envision widespread change in the entire care ecosystem. How can we help make that happen?

You are in the business of supporting the flow of knowledge in an industry that’s enormous beyond comprehension – 1/40th of the world’s GDP, according to Wikipedia. Massive systems resist change. If you want to change what is possible, you have to look for small-scale but transformational structural changes. In the case of health information technology, when interoperable data becomes accessible to the ultimate stakeholder, that is, the patient, it has the potential to seed new forms of growth oriented around value as defined by the ultimate stakeholder, the one for whom we do healthcare – patients and their families.