An eight-year study of more optimal use of personal health records finds observations of daily life that individuals enter into their PHR are the most meaningful bits of information.

The Robert Wood Johnson Foundation funded the two-round program, called “Project Health Design: Rethinking the Power and Potential of Personal Health Records,” to expand the vision of PHRs beyond being electronic copies of patient medical records, but a tool that engages individuals and offer actionable information.

Findings from the first round show individuals were not focused on the EHR data being pushed to their PHR, but on describing their own personal daily experiences. These include insights on sleep, diet, exercise, mood, energy levels, responses to medications, and other thoughts and attitudes, according to a report on study results.

“People use very personally defined and idiosyncratic cues that give them the impetus to act on their health,” program director Patricia Brennan said in the report. “These may range from how tightly their clothes fit to whether or not they have enough energy to run around after their grandchild. While these may not be indicators of any specific health problem, they are what the person attends to, and if you’re going to have person-centered health, you have to know what the people are paying attention to first.”

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Other results in the first round found that individuals were willing to use multiple devices to record, enter and receive PHR data; Brennan however, believes that convenience will take over in the long run and the functions of a PHR will be consolidated on one device such as a smartphone or tablet. Also, having access to and control over their personal health information appeared to be more important to PHR users than privacy.

With the value of daily observations recognized in the first round of funding, organizations funded under the second round focused on making the observations available to providers and fostering communication between providers and patients. “Their efforts in many respects met with frustration, but also affirmed a basic conviction regarding the empowerment of the individual patient,” according to the report.

Challenges included keeping up with technology. Project Health Design started in 2006, a year later Apple introduced the iPhone and Android phones were out the following year. That sparked an explosion of smartphone apps, along with the introduction of commercially available personal health programs that include PHRs, such as HealthVault, Dossia and the now defunct Google Health.

Being ahead of the curve was part of Project Health Design’s mission and it soon found itself trying to stay current. “Being overtaken was not necessarily a bad thing--the goal has always been to see technology used to achieve positive change in healthcare, however that occurs--but no one wants to feel superfluous, either,” the report notes.

In the second found, the project found institutional barriers to integrating PHR users’ observations into daily clinical practice. For instance, many providers--preoccupied with the electronic health records meaningful use program--were not willing to spend the resources to accept patient data into their information systems. Many physicians also were skeptical that access to detailed health information would alter patient behavior. Still, the second round ended with notable findings:

* Observations of daily living are most often incorporated into the clinical workflow not by physicians but by nurses, health coaches and other providers;

* Technologies now available enable tracking of a patient’s progress with far more specificity than is possible with weekly or monthly office visits; and

* Technology also now enables clinicians and patients to customize applications, choosing what data are recorded and how the data are presented.

“For example, researchers from the University of California, Berkeley, allowed patients with Crohn’s disease to continually revise their observations of daily living, with the goal of making each patient’s list as personally relevant as possible,” according to the report.

The complete report, which includes case studies on ways to help individuals manage their health conditions more effectively, is available here.

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