I’ll let the authors’ words describe the significance of this study:

This is the first study to assess real-world use of an industry-leading patient portal (Kaiser Permanente’s My Health Manager) in a large, ethnically, culturally, socioeconomically, and educationally diverse sample of diabetes patients with a range of self-reported health literacy skills.

It is also a great companion to the excellent post and review about the use of PHRs in Washington, DC, by John Moore. I have written a lot on my blog about the potential of PHRs for vulnerable populations, based on observations and past experience. We are now entering the era of actual data and use, which is going to make our work even stronger.

In a nutshell, Kaiser Permanente patients with diabetes were surveyed regarding the potential for disparities in their condition management and outcomes, and cross-matched with their use of Kaiser Permanente’s My Health Manager as of 2006. There hasn’t been a population of this size attached to a functional PHR anywhere in health care, which is why this information is so valuable.

The researchers measured health literacy by asking about problems due to reading, understanding, and filling out forms, not due to poor vision.

What the results show about PHR access is that there was less of an association with patients’ education level or income level with getting access. Yet, there is an association with low health literacy. In other words, health literacy hurdles followed patients throughout the process, but education and income did not. Education and income also did not appear to be a hurdle in actually using PHR functions.

Glass half-full

At some level these studies can be hard to interpret and put to use to help people because the frame can be different. The authors allude to the idea that this data represents a problem for a health care system that thinks of the Web as way to reduce access to other forms of communication (in person, telephone).

I think if this is what a health system is using PHRs for, then this is a problem. But this is not what people like me see as the use of personal health records. We see them as access enhancers and ways to model future health systems that don’t yet exist - ones that educate and inform all patients AND their families, allow them to be involved in their care to make it more accurate, of higher quality, while closing gaps within care teams (with team defined as including patient and family, of course).

In the glass half-full (or really, 3/4 full) way, this is an excellent piece of work that allows PHR designers to make health care information more understandable out of the bounds of the exam room conversation. With the advent of mobile technology, specifically, the hurdles presented by technology access will become less so, leaving health literacy as something worth thinking about because it will impact the entire health care experience, not just the online one.

I want to close with one caution that I repeat often: Concern about poor usability or lack of health literacy should not be used as a rationale to prevent medical record transparency.

I specifically asked Regina Holliday about this on our nighttime walk, after I read this study. She told me, “Ted, the medical record is the Bible. We (patients and their families) need to have access to the actual data.”

Even the most unusable PHR (of which kp.org is not, but as an example) with data is better than no data.

Ted Eytan currently works as a Medical Director for Delivery Systems Operations Improvement for Kaiser Permanente. His experience is in working with large medical groups, patients, and technologists to bring health care consumers useful information and decision-making health tools, to ensure that patients have an active role in their own health care. Visit his blog at http://www.tedeytan.com.

Tags   health literacy, physicians, phr, personalhealthrecord