The PGHD Revolution

With the rise in popularity of mobile health apps and wearable technology, the volume of patient-generated health data (PGHD) is rapidly outpacing providers’ ability to incorporate it into care. In fact, almost half of U.S. smart phone owners report using a mobile health tracking app. These new technologies create data that health providers, payers, and researchers have traditionally found difficult or impossible to obtain, e.g., physical activity reporting, sleep tracking, and continuous glucose monitoring. In 2015, ONC identified PGHD as an important emerging issue and began developing a policy framework to identify best practices, gaps, and opportunities for progress in the collection and use of PGHD in care delivery and research. HL7 has released an implementation guide and ballot for representing patient-generated data in FHIR. Last week, CMS announced an initiative, MyHealthEData, which aims to empower patients by giving them control of their own healthcare data.

Despite the availability of digital health apps and wearables which put personal health data into our own hands, we lack robust solutions for integrating PGHD and electronic health record (EHR) data. While PGHD offers a cost-effective way to collect high quality, longitudinal health information, there are many challenges—lack of infrastructure and precedent for continuous data monitoring, to name a few—associated with integrating this data with EHRs. Medical device, pharmaceutical, and health insurance companies were among the first to jump on the PGHD bandwagon. However, for the rest of the healthcare industry, progress towards adopting new technologies is slow and integrating systems can be prohibitively costly.

Available Integration Solutions

For the most part, there are separate companies that handle the EHR part, the integration part, and the consumer digital health solution part of the equation. Most companies’ integration platforms are marketed toward healthcare providers, health insurance companies, and app developers because most situations require one-off integrations, specific to the EHR and the consumer digital health solution. Few solutions pull data directly from the EHR without the help of a third-party company focused on integration and few are designed to be used by consumers.

Companies like Apple, Microsoft, and Google achieved some degree of in-house integration, but generally only by acquiring an integration-focused company. Apple released a new feature for its Health app in January that uses FHIR to download users’ EHR data from a handful of participating providers, likely made possible by acquiring Gliimpse in 2016. Google tried its hand at a health app in 2008 and Microsoft has offered a similar service since 2007, though neither met with widespread adoption. Both EHRs and smartphones (i.e. Blackberry) were in their infancy in the early 2000’s. In fact, in 2008 only 17% of physicians used EHR, compared to over 50% by 2013. It wasn’t until the American Recovery and Reinvestment Act in 2009 that EHR use picked up.

Very few integration platforms allow for bi-directional data exchange between consumer digital health solutions and EHRs, and even fewer of these exchange structured data. While there are some code systems and value sets for PGHD, it is unclear if consumer digital health companies make this standardized data available to external partners, such as EHRs, seeking to integrate. Currently, integration methods are proprietary, and integration typically takes a “black box” form, often as a platform provided by a third-party.

Non-proprietary and open source solutions are needed to effectively integrate PGHD and EHR. Apple’s Health app and Google’s Apigee, a promising open-source application management interface (API) management company the tech giant acquired in 2016, may be trying to achieve this. The Apigee Health APIx platform claims to make it easy for healthcare providers to connect with app developers and health data partners to build FHIR API-based digital services.

Lantana’s Take: PGHD still several bumps away from EHR

The theoretical model of a comprehensive medical record with bi-directional exchange between EHR and other data sources hasn’t yet been translated to practical application. With PGHD integration there are added issues of connectivity and interface protocols. Also of concern is the integrity and usefulness of the data pushed to the EHR: without clinical context, extra data can become unstructured clutter. The industry needs to implement standards for consumer digital health solutions, as it has for other areas that support clinical practice and the management, delivery, and evaluation of health services. Since Apple figured out how to get data out of the EHR to those carrying their devices, maybe they can take the next step and figure out how to get it from their device back up to the EHR?