Now Reading: Patients’ attitudes to the summary care record and HealthSpace: qualitative study

This is another article passed to me by Sophia Chang, MD, as it relates to another area of our work together, promoting patient online access in safety net health care organizations.

The work is a qualitative study of attitudes of a group of patients representative of low health literacy, “potentially stigmatising conditions,” or difficulties in accessing health care regarding the National Health Service’ Shared Care Record (SCR), which appears similar to our Continuity of Care Record. It currently has medications, allergies, and adverse reactions, and is scheduled to include a minimum data set. Also discussed with the participants was the HealthSpace, which is a “personal health organizer available via the Internet,” so my guess is, similar to what we call a personal health record.

Despite the fact that 95% of the population in the sample area received a letter informing them about the SCR and HealthSpace, there is very little recall of SCR, HealthSpace, or even the letter itself (14 %). Some of the useful points for us to think about for a safety-net population:

  • People without “potentially stigmatising conditions” including their official advocates (required to be included in the study) were unfavorably disposed to the SCR. However, people who actually had these conditions felt the benefit outweighed the risk. The authors highlighted this discrepancy even more by citing advocates as “people who claimed to speak for vulnerable groups.” It is in interesting what we find when we talk to the patients themselves.
  • Speaking of patient involvement, it is not clear from the article how and if patients were involved in developing the materials mailed to community residents. Clearly this is a very complex program and from the comments it appears that explaining the SCR and HealthSpace is akin to explaining how the health care system works in general. It’s a great magnifier of problems elsewhere perhaps.
  • “Empowerment” versus “Engagement” – comments suggest that those who are actually less engaged have more favorable opinions of SCR and unfavorable opinions of HealthSpace, indicating that they see the SCR as an advantage in reducing personal responsibility. The authors say this should be discussed further, and cite the work of Judith Hibbard and findings that “empowerment” may require cognitive skills that “not all citizens possess.”I suppose what I make of this is the idea that by itself, these technologies don’t create engaged behavior in patients that we expect. At the same time, I’ve discussed the idea that they do create different behavior in the clinicians who are accountable them.

So how would I apply the information here in the promotion of patient online access in the safety net? I might think about involving patients in the design of systems up front, to make sure that the features are compelling to them. I would convene focus groups (maybe with the support of an interested funder) to look at everything including marketing materials and approach to make sure that efforts aren’t wasted.

This article is a helpful reminder that even with the best intentions, those who design programs don’t live the lives of those who should benefit from them, and as I tweeted recently, people with chronic illnesses think about them for longer than the time they visit a medical center or log into a web site.


Conventional wisdom suggests that patient ENGAGEMENT is a prerequisite for effective use of PHRs.

We can learn from the lessons of the disease management communty that this is not necessarily true. Here's the logic:

* 5% of a population typically accounts for 60% of costs

* For the past decade, health plans and DM companies have been focusing on this population. The basic idea is to identify high cost/risk patients and to intervene before unnecessary care and costs are incurred.

* While patient ENGAGEMENT is of course highly desirable, the prerequisite is patient PERMISSION to enroll them in a DM program

* Creating and using PHRs and personal health applications for this high cost/high risk group is a natural extension of the existing DM model. While conventional wisdom thinks of personal health information gathered "BY" the patient, in this case PHI is gathered "FOR" the patient by 3rd parties (health plan, DM company, care provider)

Vince, Thanks for the great comment. Are you suggesting that PHRs like the one in the article may be designed with a DM model in mind and therefore challenged with regard to adoption because the lessons learned in DM aren't being applied? Or are you suggesting that the DM model should not be employed in supporting PHR adoption?

Ted, Several thoughts.

Generally, we should expect that there will be many unanticipated ways in which patients and their caregivers will wind up using PHRs.

More specifically, the DM model is only one example of a perhaps unanticipated but potentially highly useful application of PHRs.

In the case of the BMJ reported study, the authors implicitly assume that patient awareness and involvement are somehow critical factors in evaluating PHR success. I'm questioning this assumption.

And…I question the assumption generally, but even more specifically for the population in the study. What's the big aha in reporting that a low health literacy audience doesn't remember receiving information about PHRs in the mail? Duh.

This low health literacy/safety net population intuitively seems ideal for a DM type program. They likely are high cost/high risk, and could benefit from a 3rd party (DM company, health plan, physician, caregiver) coordinating care on their behalf. In this scenario, you need the patient's permission to create a PHR on their behalf, but much of the "involvement" can be energized by a 3rd party care coordinator.


Very helpful – I honestly have never thought about the DM model being applied to PHRs and the difference in thinking that requires. I can see how that's a use case, in addition to the one I've been interested in primarily, which is the PHR changing the model altogther. Thanks for the mind expansion and participating in the conversation with me,


Ted Eytan, MD