The growing trend toward incorporating health information technology (HIT) and patient-defined and patient-generated data into the healthcare delivery system is clear. From funding included in the American Recovery and Reinvestment Act of 2009 to provisions included in the 2010 Affordable Care Act, to the call for inclusion of patient-generated data in Stage 3 meaningful use, HIT implementation is an essential component of federal plans to improve healthcare quality and lower costs.
The trend may be clear, but we still need a better comprehension of how broad the range of patient-generated data really is. Some data that can only be captured by patients, like blood pressure readings taken at home at night, are well understood by clinicians. But there is another kind of valuable data that is not only generated by patients but defined by individual patients – the detailed observations people make as they go about their daily lives. We need to find ways to integrate patient-defined and -generated data into the clinical setting in a secure, meaningful way.
Enter Project HealthDesign and a new conception of what comprises health data. For the past seven years, 14 teams supported by the Robert Wood Johnson Foundation’s Project HealthDesign have worked with hundreds of patients across a wide variety of age groups to develop human technologies that enable people to collect and record health data in the course of their everyday lives, not just during clinical office visits. These Observations of Daily Living, or ODLs, are a unique form of patient-generated data that can be electronically tracked to provide a reliable record of day-to-day activities, like how a patient feels after they eat, how well they are sleeping, whether or not they have pain, how they exercise, what their mood is, etc. This data can then be shared with clinicians and fed back to patients in forms that are meaningful and understandable.
The project’s grantee teams found that when patients tracked personally relevant ODLs and shared that information with providers, it helped patients lose weight, lower the incidence of asthma attacks, reduce pain and discomfort from Crohn’s disease and remember to take medications on time. The mobile applications created by Project HealthDesign teams allowed patients to easily track their ODLs and allowed real-time collaboration between patients and their providers.
In a June 2012 testimony with the HIT Policy Committee Meaningful Use Workgroup, I testified with Nikolai Kirienko, co-project director for Project HealthDesign grantee Chronology.MD. We were tasked with helping the workgroup think about ways to incorporate the use of patient-generated data into Stage 3 of the Meaningful Use program. We said that HIT policies need to expand the idea of patient-generated data to include patient-defined data, like ODLs, because we know that sharing data that is relevant to patients with their clinicians improves the business of healthcare. We also said that we need federal standards for utilizing personal technology to share data and patient insights with providers.
We know that when patients and clinicians use technology and work together, health is improved, but it’s up to the industry and policymakers encourage this two-way sharing of health information and make sure it’s done safely and effectively. While much remains unresolved in the policy arena, the substantive research by Manatt, Phelps & Phillips, LLP, Project HealthDesign’s legal and policy consultants, has provided excellent guidance to help policymakers think through the implications of handling this new kind of patient information.
The old paradigm, where health data flows from provider to patient, is no longer sufficient. Sharing health data electronically between patients and providers is now a two-way enterprise. It’s not only the wave of the future, in many places it’s the reality of today. Policymakers need to create regulatory frameworks that foster this new model of communicating health data, and make sure those frameworks are broad enough to include health information that is meaningful to patients in their everyday lives.
This conversation is going on right now. The Planning Room at HHS contains a wealth of information and commentary that needs to be part of the policy discussion. For policymakers, it’s important to listen to the many voices contributing to this effort to improve healthcare for everyone.

Flatley Brennan is national program director of the Robert Wood Johnson Foundation’s Project HealthDesign.