In an effort to expand the use of personal health records beyond simply a copy of records that patients can view online, the Robert Wood Johnson Foundation launched a project encouraging teams to develop ways to stimulate and innovate patient engagement with their personal health records through health IT.
Project HealthDesign ran from February 2006 through June 2014 and provided more than $9.4 million in grants to 14 interdisciplinary teams.
"Being able to say, 'My blood pressure in 2008 was 115 over 72 and last month it was 112 over 74' — that's not very exciting," said Stephen Down, chief technology and information officer of RWJF. "With Project HealthDesign we wanted to challenge the field of people who are working on this to think bigger."
RWJF has released the findings of the eight-year project. Here are seven key findings from the report.
1. Individuals find information about their daily lives more meaningful than clinical information. Project leaders called such experiences "observations of daily living" and found that incorporating such observations with clinical measures adds depth and dimension to clinical data in health records. These observations may include details on sleep, diet, exercise, mood, energy levels and response to medications, according to the report.
"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," said Patricia Brennan, RN, PhD, national program director of Project HealthDesign.
2. These observations of daily living can help improve clinical decisions. By incorporating everyday behaviors and activities into clinical records, providers have a more complete image of the patient, and can better tailor treatments and make clinical decisions pertaining to that individual's life.
3. Individuals are generally willing to use many technologies to collect, aggregate and enter data into their personal health records, but in the long run are more likely to want to see all functions of the health record on one all-containing device.
4. Patients appeared more concerned with control over their own information than privacy. Researchers equate this observation — being willing to trade some degree of privacy to receive services — to the general acceptance of online banking. Additionally, individuals were more interested in the benefits of having access to their records than to the privacy risks associated with them.
5. More often than not, providers other than physicians are the ones incorporating observations of daily living into clinical records. Nurses, health coaches and other healthcare providers are the ones inputting this information and then call physician attention to any standout data.
6. Technologies allow for more specific, daily patient tracking than consistent trips to the physician's office. With wearables and other health tracking devices, patients' information is continuously recorded, which provides a more complete overall view of the health of the patient than if the patient were to go to the physicians office every week.
7. Individuals preferred help and self-care via computers over physician visits. According to the report, many individuals were not concerned that health technologies might reduce the amount of time they spend with clinicians. Additionally, participants said self-care enabled by technology will help reduce treatment delays and costs, as well as lessen clinician workload, which individuals say they perceive is too high.
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