One Size Doesn’t Fit All

By Gillian Hayes, University of California, Irvine, FitBaby Principal Investigator.

Read all the FitBaby blog posts.

Personal health records (PHRs) are systems maintained by patients and their families to track health-related information and share that information with clinicians and other interested stakeholders.  They  are central to the way we might get observations of daily living from patients and their families into clinician hands.

However, in the United States, only 7 million adult patients make use of PHRs. So, one of my MS students, Leslie Liu, set out to understand what combination of usability issues and functionality concerns were limiting people’s ability to use PHRs and their willingness to adopt them. In this work, we conducted both in-lab usability evaluations and interviews with medical professionals and patients surrounding three PHR systems:  Microsoft HealthVault, Google Health, and WorldMedCard.

 
Our results suggest that substantial usability challenges and the complexity of PHR systems can lead people to believe they “may not actually save time” by using them or that they would only be useful if a patient has a “serious health condition”.  Furthermore, the current state of these systems includes minimal flexibility and customizability for the specific needs of the different stakeholders.

What’s more, even physicians in favor of patient-managed data in our study were worried about the balance of burden and benefit. For example, one physician told us in an interview:

“…most of that information is really pretty easy to get on a first visit …. if they’re…conscious. …the only advantage would be if a patient kept it up to date... But [the PHR systems shown] almost seemed too simplistic…”

The results of our research suggest that a big part of the problem is that these systems have primarily been treated as monolithic solutions capable of serving a wide variety of stakeholders without substantial personalization or customization. Everyone is trying to solve the problem of managing records for everyone and every condition. The problem is, this model does not always allow for full consideration of the complex set of issues that emerge in health care and the disparate interests of the patients, family members, friends, clinicians, and staff members involved in their use.

As PHR systems evolve, there continues to be substantial need for addressing patient-provider communication, collaboration, and information sharing through adaptable and flexible collaborative systems to effectively advance collaboration and to improve health care delivery and outcomes.

In the FitBaby project, and in all the Project HealthDesign projects, we will be using PHR systems to store and manage the massive amounts of data that will come out of collecting observations of daily living. The PHR is essential to our ability to collect, store, and access these data. The question for us is, how can we develop visualization and alerts on top of these systems to allow for the kind of customization and flexibility that the results of our research on PHR suggest we need.

We’d love to hear from anyone out there using PHRs (or not!)… tell us how things are going?  What can we do to make these systems fit you the individual and your needs?