Personal Health Data Goes to the Doctor

Jul 9, 2014, 9:15 AM, Posted by Christine Nieves, Steve Downs

Since the advent of the stethoscope, information-gathering technology has been helping doctors and other medical professionals improve patient health. Over the past decade, RWJF has funded a series of projects that suggest helping patients track and share data with their clinicians can strengthen the patient-clinician partnership and improve health outcomes. It makes sense that giving clinicians access to patient-tracked health data can improve the health of individuals and communities. As simple as the concept may sound, though, unlocking personal health data for clinical purposes has proven quite challenging. 

Individuals can now use health apps on their smartphones to track almost anything—from activity to sleep, heart rate to mood. There are a number of barriers to fully leveraging these apps to improve care, and one of them is data integration. There is still no practical way to use these data to improve care. Most data generated by new apps and devices are not designed to align with existing clinical data types, making it very difficult for health providers to use and trust them in a clinical setting. Furthermore, most apps export their data in proprietary formats and servers, making it difficult to access, combine and make sense of data. For example, it is critically important for a clinician to know whether a blood glucose reading was taken in the morning or evening, if a weight reading was manual or automatic, and if sleep data came from a wearable device or a sleep journaling app. These barriers have kept most personal health data in silos, out of the clinical picture.

RWJF has been working to address this challenge since 2006, when we funded Project HealthDesign, one of the first efforts to explore how personal health data could involve individuals in their own health care. The resulting studies showed great potential—patients were able to work with physicians to successfully manage conditions ranging from Crohn’s disease to obesity. By tracking and sharing observations of daily living (ODLs) with their providers, patients reported feeling supported and engaged, and their health outcomes improved.

To continue breaking down the data barriers between clinicians and their patients, the Foundation invested in Open mHealth, a nonprofit startup that has developed an open API framework designed to help bring personal, digital health data into the clinical setting. App developers can use this open architecture to build apps that create clinically relevant, actionable data streams. The data schemas embedded in the architecture serve as a ‘universal dictionary’ for mobile health (mHealth) data, enabling integration between different types of data from multiple sources. By aligning the way that data is written and read with existing clinical data standards (e.g. LOINC and SNOMED), and designing the use of data into the clinical workflow, Open mHealth tools will allow users to share their health observations in a way that’s useful to clinicians.

We invested in Open mHealth in September 2011 and have recently extended our commitment, providing an additional $1.48 million grant to strengthen these tools and drive adoption among health app developers. RWJF has also set up a challenge grant to match donations made to Open mHealth by other funders. From now until January 2016, RWJF will match funding on a one-to-one basis for up to an additional $575,000.

We envision a near future where patients can share activity-tracking or calorie-counting app data with their providers and providers can incorporate that information into their patient care regardless of the device or app a patient is using. There are still a number of non-technical barriers to personal health data integration, but Open mHealth is working to remove one major technical one. By enabling an open flow of data into the clinical workflow, the Open mHealth ecosystem will allow a more comprehensive view of a patient’s health status—arming clinicians with the insights to deliver on the full promise of personalized preventive care.

This commentary originally appeared on the RWJF Pioneering Ideas blog.