In 2006, I had the honor to work on a statewide effort to both promote the digitization of health data, and to look at appropriate ways to aggregate and share as complete a record as possible at the point of care. This was intense and involved in-depth study of business models, technical models, privacy and consent, security, legislation, technical standards – while engaging with providers, payers, employers and government agencies. It was both stimulating and exhausting! That was what I call “provider-centric” health information exchange.
I’ve spent all my time since then working on various digital health programs, projects, products and businesses - but in 2006, I was new to healthcare. Except for some work in telemedicine, most of my experience had been either as a patient or family/friend of patients. When I first learned about an alternative that was patient-centered which, though still challenging, would simplify the process while simultaneously giving benefits to the patient and family, I was thoroughly intrigued. “Consumer-directed exchange,” as we now call this alternative of allowing patients to direct data from a medical encounter to another location either for aggregation (e.g., health record bank, PHR) or use (another provider or family member) was considered too disruptive at the time. Engage patients? Give them control of their data? Put all of the data in one place not “owned” by the providers? Get outta here! The system would not disrupt itself, and the result is that virtually no one in the U.S. has a true, complete record.
Our health data in its current scattered form, held captive in various silos, is not only the cause of thousands of costly medical mistakes each day due to its incompleteness, but keeping the data in pieces is preventing an incredible amount of value from being generated.
You see, you and I are not just patients, we are people. As a person, I may be a patient, but most of the time I am not. I make decisions every day that impact whether I will become a patient. Studies indicate 70% of medical costs are due to such lifestyle choices. Shouldn’t I have access to apps that are powered by my medical data that influence my behavior? Perhaps I could be incented by a coach, insurance company, provider, or family member to use those apps and/or devices? Oh, and should I be diagnosed with a condition, couldn’t my complete data be of value to a researcher searching for new and better treatments, or a cure? Shouldn’t there be an easier way to identify which clinical trials are right for me? Why can’t I generate value based on who I am? MY medical data, left alone in disparate locations, is not only dangerous to my health, but it’s like putting your money under various mattresses, instead of in the bank where you can gain interest or invest it. Aren’t we supposed to be looking in this country for solutions to increasing healthcare costs, an unsatisfactory level of medical mistakes, lack of medication compliance, and poor lifestyle choices?
It starts with accelerating efforts to facilitate consumer-directed exchange, and person engagement is the key. I’m excited that Betterpath’s mission is to empower the person with their data, enabling them to participate more fully in life, in research, and when needed, in their health care. What app would you build if you had access to all of your health, activity, and fitness data? Better yet, what incentives, monetary or other, can you imagine would influence your use of that app?