Personal health data: 5 key lessons for better health

Like many, we followed Apple’s recent announcement about its Health app and HealthKit development platform with interest. In many ways, it echoed a vision — of an ecosystem where personal health data formed a platform upon which many could develop apps that help people live healthy lives — that we have supported for many years through the Robert Wood Johnson Foundation’s Project HealthDesign. We were particularly interested to hear about two items Apple announced: the linkage with Epic’s electronic medical record system and the partnership with Mayo Clinic to enable clinicians to track data from selected patients and be alerted when certain values go out of range.

This idea — using the data people generate on a day-to-day basis to inform their physicians, nurses or care teams — was at the core of five research projects supported through Project HealthDesign. In short, we found that data on day-to-day experiences, behaviors, symptoms and clinical measurements really matter. These data can inform treatment decisions, leading to changes in medications, changed diagnoses and insights that can motivate behavior changes.  At the same time, there are real challenges in integrating these data into the information systems and the workflows of providers, who are already short on time.

As exciting partnerships like this one emerge, with the potential to extend the culture of health from the clinic to the home in powerfully meaningful ways, we’d like to share key insights from our work with Project HealthDesign, which included more than 25 clinics and 500 patients.

1. Tools that help people really do get used.  Gillian Hayes and the Estrellita group at University of California-Irvine created an app to help moms of very-high-risk babies manage the in-home care and cross-system care coordination required of them. A “fussy-o-meter” let moms record the time and intensity of the baby’s fussy periods, and a diaper check monitored fluid balance. Moms brought their smartphones to visits with various clinicians, allowing them to provide a more accurate history, and be more confident that their experiences were heard and understood.

2. Capturing health in the moment improves care. Steve Rothemich of Virginia Commonwealth University and Barbara Massoudi of RTI International developed BreathEasy, an asthma trigger and symptom recording app on a smartphone. Daily uploads to a clinic’s dashboard allowed a triage nurse to monitor the course of adults with asthma, who followed protocols to provide reassurance to patients doing well, establish urgent care appointments for people with impending crisis, or re-organize medications to more efficiently treat symptoms.

3. The data tsunami can be avoided with careful design efforts. Physicians and nurse practitioners directing the Chronology project worked with patients to develop a tablet-based tracking and reporting utility.  Patients and clinicians together planned what data needed to be tracked, how often tracking reports should be submitted and how to interpret the tracked information.

4. Clinical data alone is not enough. Observations of daily living, personally meaningful measures defined and tracked by the patient, help patients better understand their everyday experiences and give clinicians a window into a patient’s world.  Physicians at Group Health Cooperative who worked with physician James Ralston found that they could better manage insulin-dependent patients when both the patients and the clinicians understood how daily activity patterns, family dynamics and eating preferences disrupted or supported an insulin routine.

5. Technology is the easy part — institutional policies are hard to change, and clinicians’ time is precious. The next set of challenges involves resolving important questions, such as:

  • How will clinicians and patients together decide what data should be collected – and at what frequency and granularity?
  • How will these data be received and stored?
  • What clinical workflow is needed to make sure that it’s clear who is responsible for reviewing the data and what protocols will guide the interpretation and response to these data?
  • How will clinicians be compensated for reviewing the data?
  • And how will providers level-set patient expectations to match clinical resources?

To date, most of the action in health apps has focused on providing value to consumers independent of any connections to the formal health care system.  Apple’s announcement, signaling that new players are ready to take on the challenge of bringing personal health data into the health care system, is an important development. Our experience is that the effort will be challenging, but that the opportunity to enable better care and, ultimately, better health, is real.

Patricia Flatley Brennan is national program director, Project HealthDesign, a Robert Wood Johnson Foundation national program. Steve Downs is chief technology and information officer, Robert Wood Johnson Foundation.

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