Remove barriers to sharing health data and create a continuously learning healthcare system
In a May 2016 paper in the journal Academic Medicine, I described moving to the “third curve” of healthcare. The first curve is traditional fee-for-service medicine. The second is population health, as represented by traditional healthcare organizations shifting their focus to value-based relationships.
Precision medicine, big data and digital technology offer us the promise of moving to a world where we can truly create the third curve— personalized health for every individual, no matter what their circumstances or health.
To achieve personalized health, individuals must truly own their health information in ways that make it actionable for them and their caregivers. This data cannot be limited to clinical and diagnostic results, but must also include vital information that reflects social, economic and environmental determinants of health. In this new movement, each of us has a personalized, evidence-based, longitudinal care map and access to a health ecosystem that brings together exactly the services we need, beginning in the home.
To create a health ecosystem that is effective and efficient for each person, we must have the infrastructure to support it. While excellent clinicians and facilities are essential in this transformation, to be truly successful in eliminating the over $1 trillion of waste in the American healthcare system and improving outcomes, we must commit to end-toend interoperability for all healthrelated information. We also must create information technology interoperability that enables individuals to use their smartphones or other devices to link with personalized digital monitoring tools, instantly access their health data, and track not just medical data but behavioral and environmental factors. Once that data are collected, it can turn into actionable information that results in improved adherence to evidencebased treatment. I would like to see the day when each of us truly owns our own health information like we do our financial information and we don’t have to penalize hospitals and doctors for not sharing it.
Driving the transformation to systemic data sharing
As individuals gain access to an open, data-sharing system, our bioscience research infrastructure will also reap tremendous benefits. In a learning health system, effective data sharing accelerates the creation of new knowledge that can improve outcomes, remove waste and ensure improved access by providing clinical and social services at the right time and right place by the right clinician. As my coauthors and I proposed in a discussion paper titled Data Acquisition, Curation, and Use for a Continuously Learning Health System: A Vital Direction for Health and Health Care, recently released by the National Academy of Medicine’s Vital Directions Initiative, the successful creation of a research and health system based on data sharing will depend on three factors: incentives that change the current culture of siloed data; creating the expectation that everyone has a right to their data; and the formation of a tightly integrated infrastructure that enables data aggregation from disparate sources.
Looking to the future, I believe that a trio of drivers will accelerate the formation of a patient-centric health ecosystem informed by data. The first is the move to alternative payment models where every stakeholder shares risk that is mitigated by open access to data. Second is the move to consumer-driven expectations that mirror changes in other segments of the economy. Consumers who hail an Uber or cannot remember the last time they visited a bank will become less willing to endure the frustrations of a fragmented health system. The third driver is the inevitable impact of federal initiatives to promote data sharing and transparency.
Disruption is coming
We must seriously contemplate the impact of a host of new and innovative technological solutions, from big data, to digital, to blockchain, that will move us to the third curve and facilitate personalized health and healthcare. From physicians who spend increasingly frustrated hours dealing with administrative burdens in order to have a few precious minutes with their patients, to patients who are increasingly frustrated by the complexity and cost of care, the status quo is ripe for disruption.
Dr. Harold L. Paz is executive vice president and chief medical officer at Aetna.