Discussions of “exchange of personal health data” are usually focused on healthcare providers, who have traditionally created and stored paper medical records to document the clinical care they provide to patients. In recent years, the US has invested billions of dollars in making healthcare digital through electronic health records (EHRs) and health information exchange (HIE) networks. A key goal of this digitization is the electronic exchange of personal health data to improve the treatment of individuals and the management of health across populations.

Technology is Changing Roles, Not Just Infrastructure

Gradually, EHRs are replacing manila folders, and even more gradually, providers are electronically exchanging the clinical data within them. But information technology can be a disruptive force, as we’ve seen in other industries such as banking and travel.

Among the most fundamental changes in healthcare is a redefinition of the role of the patient and family. In the past the doctor stood on a metaphorical pedestal, from which he or she gave instructions and expected few questions or contradictions from those who “patiently” carried them out. Today, however, patients and providers are moving toward a more collaborative relationship in which the needs and preferences of the patient and his or her family are of central importance. Direct access to health information (not just from personal health records, but also from websites and online peer groups) is contributing to this shift.

Why the Patient Should Be at the Center

The rationale for a health system that revolves around the patient and his or her family is both philosophical and practical. Philosophically, the body is part of the human essence—it is the vehicle that propels us through life. Who but the individual should make choices about his or her own body and how it is treated? In the medical records context, the legal right to access one’s own health information was established by the Health Insurance Portability and Accountability Act of 1996 (HIPAA), which was recently re-interpreted to specify that if an individual’s health information is in a digital format, he or she has the right to access it electronically.

On the practical side, health is determined to a great extent by actions of the individual and family. Everyday choices about things like diet, exercise, sleep, and smoking dictate about 40% of the overall picture of our health, while traditional healthcare services impact only 10% (other factors include genetics and the environment). Even when it comes to healthcare services, the individual (and family) usually decides whether and where to seek professional care, and whether to follow up by undergoing procedures or taking medications.

The goal of consumer engagement—a popular phrase these days—should not necessarily be more time or effort expended on health by the individual, but a more effective use of the individual’s efforts in support of his or her own health goals.

Network Architectures that Empower Patients Can Break the Interoperability Logjam

Although online access by patients to their own health records has increased from about 26% in 2011 to 50% in 2015, much of that access is via portals that don’t enable people to export their own data. These portals represent a centralized model of data sharing as opposed to a peer-to-peer (P2P) model, in which participants can exchange information directly among multiple parties in a distributed fashion. As a result, patients who receive care form numerous providers (as most do) often have to log into several portals to access fragmented slices of their health information.
Ideally, patients should be able to view, download, and transmit (or “exchange”) their own health data electronically, enabling them to compile it and to effectively operate as an “HIE of 1”—a personal health information exchange hub with the power to grant access to their health information—or not. Individuals may choose to share their data with multiple providers, family or friends, researchers, other patients, research organizations, or anyone else they choose.
Leveraging the “right of access” specified by HIPAA and the related Clinical Laboratory Improvement Amendments (CLIA), network architectures that empower patients to export as well as import data have the potential to circumvent the current logjam in digital health exchange, the severity of which is documented by the Office of the National Coordinator for Health IT (ONC) in its “Report on Information Blocking” and its ten-year “Interoperability Roadmap.”

The Impact of Meaningful Use Requirements

The multi-billion dollar federal “Meaningful Use” EHR incentive program, funded through the American Recovery and Reinvestment Act of 2009 (ARRA), is substantially defining the digital health infrastructure for the US as it drives adoption and shapes the usage patterns of EHRs. There are several stages of the program, some of which are still being defined.
Stage Two of the program initially included the requirement that 5 percent of a participating provider’s (or hospital’s) patients view, download or transmit their own health data electronically during a particular reporting period. However, in response to strong opposition from the provider community (and despite vociferous patient opposition), that requirement may be scaled back to just one patient per participant (one person, not one percent of patients!), slowing progress toward patient access to and exchange of digital health data. Stage Three of Meaningful Use, however, which is less defined, is expected to incorporate Application Programming Interfaces (APIs) for EHRs, hopefully catalyzing health data exchange generally, including exchanges with and through patients.

Patients Can Do Much More with Digital Data Than Direct Traffic

Networks that enable patients to access their health data digitally will improve health literacy, healthy action, and a functioning health economy. Digital data can be presented in multiple formats including different languages or font sizes, and incorporating visual graphics or videos to make information clearer and more compelling. This is particularly important given staggering health literacy challenges: according to the Department of Health and Human Services, nearly 90 percent of Americans have difficulty using information routinely available today in healthcare facilities and retail outlets.

In addition, according to a study by the California Healthcare Foundation, electronic access to records also encourages individuals to ask their providers questions and take actions that benefit their health—an effect that is particularly pronounced among underserved populations. As demonstrated by a study at Geisinger, through digital records access, patients can effectively identify errors and omissions, further contributing to healthy outcomes.

Finally, digital access to health data can contribute to the economy both by helping people save money and by creating new business opportunities. This is one of the concepts highlighted by the Blue Button Initiative, a federal program that supports government agencies and private sector stakeholders including providers, health plans, and pharmacies in sharing data directly with consumers (or the apps or tools they choose) via standardized technical formats. Standardized clinical data can be mashed up with other kinds of data—about behavior, genetics, the environment, or the costs of health services—to help people to make more informed decisions. Greater availability of health data from myriad sources, including the roughly 70 thousand consumer health apps now on the market, is catalyzing the growth of an emerging digital health economy.

Why is this Taking So Long?

In my opinion, the two biggest roadblocks slowing the exchange of personal health data in a way that incorporates patients (and the patient centric vision of healthcare it enables) are 1.) Money, and 2.) Culture.

In today’s predominantly fee for service world, providers have little incentive to share data with patients, and several financial disincentives for doing so, including increased liability, unreimbursed time, and the risk of a decrease in billable activities. Compounding the problem, the EHR vendors on whom exchange relies technically have their own reasons not to support the flow of data, including the desire to make it difficult for providers to switch vendors without losing their existing records. While I am optimistic that new payment models associated with Health Reform, such as Accountable Care Organizations (ACOs), will flip these incentive structures in a way that supports health outcomes (and thus requires patient engagement), it will take time.

Culture is a challenge that impacts providers and patients alike. Some individuals in both camps are reluctant to abandon the traditional hierarchical approach to healthcare in which “the doctor knows best.” But with the term culture I am also referring to knowledge and attitudes more generally.

While the average person may be aware of healthcare’s high costs and health insurance coverage challenges, he or she doesn’t realize how broken the system is in other ways: for example, care varies widely and often is not grounded in scientific evidence, there are about 10,000 avoidable medical errors a day (resulting in 400,000 preventable deaths per year), cost and quality have little correlation, unnecessary but expensive and risky procedures are performed regularly, and the focus is often on treating a particular body part or condition at the expense of the well-being of the individual.

If most people realized all this, they would, I believe, be more inclined to demand their own health records and participate more fully in decisions related to their own or their loved ones’ care. One of the challenges ahead of us is to help people understand what‘s at stake, and support them in using technology to participate more effectively not only in influencing their healthcare, but in shaping their long term health through everyday actions.