Posted February 9, 2009 by Lygeia Ricciardi
To get a sense of how integration of ODLs is currently being addressed in the field, I spoke with Jan Oldenburg, Senior Practice Leader in the Internet Group at Kaiser Permanente. Kaiser is an integrated health care delivery system with 8.7 million members. It’s also a recognized leader in the use of personal health records (PHRs)—more than 2.4 million Kaiser members have signed up for the “My Health Manager” PHR website, which also boasts impressive usage statistics.
According to Jan, while there are opportunities for patients to enter their own data into the PHR, providers (in most cases) are not currently using that data. Kaiser encourages patients to collect their own data because this kind of involvement leads to a sense of empowerment, control, and enhanced understanding of personal health. But how best to share that data with health care providers is tricky.
One concern is liability. Let’s say a patient enters symptoms into her PHR that are consistent with a heart attack--but her physician does not see them. If the patient goes untreated, is the physician liable for not taking action? What if the data missed by a provider is about a condition that is less acute but might, nevertheless, alter a diagnosis? Kaiser’s research to date indicates that patients assume their care team will review anything they enter into their PHR—whether or not this is actually the case. As a result patients may think they are adequately communicating and fail to reach out via phone or in an office visit.
The liability concern is closely linked to worries about workflow and resources. Healthcare providers have notoriously limited time allotted per patient. Can they be expected to wade through potentially large volumes of information about diet or mood–or whatever a patient may choose to record? And will looking at patient-generated data require a disruption in workflow, (for example, if it means logging into a separate account)?
Some providers also fear that patient generated data may be
inaccurate, and don’t want it to be part of the official clinical record. As
Jan points out, though, in the current (mostly non-digital) healthcare
environment, providers have to make decisions all the time about how to handle
patient generated data. In office visits patients verbally (or through a
written intake form) report on medication compliance, exercise, symptoms, their
family health histories, and other aspects of their health. In these cases,
too, providers have to use their own judgment to decide which information is
most likely to be accurate and relevant based on specific circumstances.
Given that Kaiser Permanente, an integrated system and one that is especially open to technology and patient empowerment, is struggling to figure out how to integrate patient generated data, it is safe to assume that other systems and smaller practices are, for the most part, even farther from doing so.
I hope many of these problems will eventually be worked out; I remember hearing some of the same worries from provider organizations about patients using email six or seven years ago—concerns that have, for the most part, not borne out because patients and providers developed a joint understanding over how and when to use email (though of course many still do not). In addition, many of the issues Jan identified would be mitigated by the development of better analysis and decision support tools (as called for by a recent IOM report) to help both providers and patients wade through increasing volumes of information to discover useful patterns.
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