Prescription for PHR digital divide: CPR (Consumer Public Relations)

Just published this week in the Archives of Internal Medicine is a must-read paper about the digital divide in PHR adoption. The digital divide in adoption and use of a personal health record, by CK Yamin and colleagues at Brigham and Women’s Hospital in Boston, looks at PHR use among Partners Healthcare patients.

The researchers compared users and non-users of the Patient Gateway PHR. Those who registered for the PHR with a mailed password and created an account, were compared to patients who never registered. These 2 groups were compared across demographics including gender, age, insurance status, race and ethnicity. They also looked at geocodes, based on an address, and used this to estimate an individual’s socio-economic status. Finally, they looked at the presence of 5 chronic conditions (the most common plus heart failure, the most expensive), as well as the frequency of PHR login.

Many findings are what would be expected. Patients using the PHR were somewhat more likely to be women, 30 to 65 years old, have commercial insurance, and be at a higher socioeconomic level. In addition, non-white and Hispanic were significantly less likely to have registered for the PHR. While the minority populations were small at under 10%, the differences were concerning. For example, African American were only half as likely to adopt a PHR as whites.

An interesting result was that patients having 1 or more chronic condition were more likely to have registerd for the PHR. Another welcome finding was that once people were registered, the usage of the PHR showed little differences among the demographic and clinical groups.

In other words – there’s disparity in the people coming to the playground. Once inside the playground gate, however, people look pretty similar.

I did a very similar, albeit smaller, study years ago in Maine. Using Claims Data to Examine Patients Using Practice-Based Internet Communication: Is There a Clinical Digital Divide?, published in Jounal of Medical Internet Research, which compared users and non-users of an early PHR prototype. The results were almost a perfect match, including the finding that patients with a chronic condition were more likely to be users. Bingo.

By the way, once I found out (in 2004) that PHR users weren’t just the “worried well”, and the promise to improve patient health was real….I began the journey into consumer informatics! Side note: Dr. Richard Rockefeller, early champion of using technology to empower patients, funded that study. A former family practice doc in Maine, Richard has been U.S. Chair for Doctors without Borders for some time.

So, just how do we get people to come to the playground? How do we raise awareness and understanding about PHRs? How do people get a sense of what’s in it for them? I’ve posted before about shining a light on the black box of PHRs. The feds can wire up the country and get everyone connected, but that’s not going to solve this issue. We need new ways to think about this, new designs and new types of marketing, communication, and bringing the technolgy to the people. Otherwise we’re headed for greater disparities.

What’s your prescription?

2 thoughts on “Prescription for PHR digital divide: CPR (Consumer Public Relations)

  1. Dave Chase

    I think there’s 2 things that could be done that would help but there’s one huge item. First the two “easy” items…
    1. Semantics – *Personal* Health Record, particularly with clinicians, suggests an island of information that isn’t relevant or there’s more “noise” than “signal”. I am starting to use Connected Health Record as it’s clear that the greatest value is realized when there’s a strong, secure and private connection between the individual’s record and the clinical EHR with both parties in control of what is shared
    2. Avoid boiling the ocean. I think a PHR doesn’t mean much to the typical consumer. Rather, I think the specific uses cases and benefits should be articulated whether it’s lab results or secure messaging between the provider and patient.

    The huge item that would change the equation is provider compensation. By all accounts, the only places where there’s meaningful PHR adoption is with the VA and Kaiser Permanente. Those “captive” models don’t have the disincentive to have PHR-EHR connections and patient-provider communication common in the fee-for-service model that doesn’t compensate providers for email and phone interaction. If the compensation issue is addressed, it will go a long ways towards addressing it. I will predict that next area of broad adoption of Connected Health Records will be in retainer-based primary care practices such as Qliance. With the retainer taking care of their compensation, they realize that it is better for them and the patient. The MDs I’ve spoken with in those models say that more than half their patient interaction is via electronic means (phone, email, etc.) which has a side benefit of saving time and money.

  2. Sue Post author

    Appreciate the comments, Dave. Couldn’t agree more that the right services need to be promoted, and the most relevant information shared with providers. Love the “both parties in control of what is shared”.

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