The Next Integration Wave: Patient Directed Exchange

Last week’s CNBC story about Apple’s interest in healthcare data is trending right now. For those who have been paying attention, there’s really not much new information. Apple’s Health app has always been a place to collect health and fitness data, and last August’s acquisition of Gliimpse made it clear Apple was committed to that direction.

Apple’s plan is to make the patient the collector, keeper, and controller of their own healthcare data. This strategy is generally known as patient directed exchange (PDEx). My favorite description of PDEx came from Doc Searls in 2008 when he said, “the best way to fix health care is forpatients to be the platform for the care they get from doctors andinstitutional systems.”

In order to clearly perceive the value of PDEx, it’s worth examining a couple of other, unsuccessful attempts in similar areas: personal health records (PHRs) and patient portals.

Personal health records attempt to provide a place for patients to collect their own health data. The two most famous examples are Google Health, which was discontinued in 2012, and Microsoft HealthVault, which still exists but is not widely adopted.

The biggest obstacle these early systems faced was the ability to collect data. Manual data entry is simply too cumbersome for most patients, and electronic methods of exchanging data were just beginning to emerge. Few doctors and hospitals stored records electronically, and even fewer had a way to provide electronic copies of records to patients. The idea of a PHR was ahead of its time.

The Meaningful Use (MU) program in the U.S. helped change the status quo. One of the MU requirements was that doctors and hospitals needed to provide electronic methods for viewing, downloading, and transferring (V/D/T) patient records in a standard format (CCD and later, C-CDA). Most providers chose to expose V/D/T functions through a patient portal that was connected to the institution’s electronic health record. After the provider finished documenting an encounter in the EHR, it would be available in the patient portal. From there it could be viewed in human-readable format or downloaded in machine-readable format.

But this introduced another problem. Patients who receive care in multiple locations would need to manage separate logins to separate patient portals. The problem is compounded by the additional silos introduced by consumer fitness devices like step counters, blood pressure cuffs, and smart scales. Collecting and reconciling data from across these sources is insurmountable for all but the simplest situations.

Perhaps that is one reason why patient portal adoption remains at just 33% in urban areas and 18% in rural communities. PHRs had the right idea – to centralize and standardize data – but the wrong timing. Patient portals are newly possible due to Meaningful Use, but they’ve adopted a model of making it difficult to share data. That’s where PDEx comes to the rescue.

The new generation of PHRs feature built-in connections to existing patient portals and fitness device services. They can simplify and automate the process of collecting data, so that patients can manage and visualize their complete health record all in one place. Best of all, the patient has a central place from which to manage data sharing, privacy and consent. Patients can push all or part of their record to caregivers, new healthcare providers, researchers, or insurance companies. With the patients mediating the exchange, there is no need for data sharing agreements between the entities that send and receive the data.

The approach is not without challenges. Adding the patient to the process of transferring health records introduces a new point of failure and the possibility of data tampering. For example, a patient might choose to hide a portion of his chart that he considers especially sensitive, when in fact it turns out that data is crucial for the treatment he wants to receive. There will still be providers for which HIEs remain relevant. In many cases it makes sense for institutions to share all their patient data with one another instead of relying on all of the patients to participate in a PDEx approach.

Even though traditional interoperability won’t go away, it’s finally practical to use PDEx to augment it, so that we can have the best of both worlds in achieving a longitudinal view of patient health records.