I have been thinking along the same lines as Luke Rosenberger (who led an excellent Librarians and ePatients unconference session) in wondering if the materials commonly referred to as consumer health or patient education materials truly meet the needs of e-patients, with a twist.
In the first post Luke explains
For example, librarians (particularly health science librarians) tend to speak of a certain subset of health information as “consumer health information” — material created with the “consumer” as its intended audience — as opposed to material intended for use by clinicians or researchers.
to which I would add an emphasis on the use of clear language terminology that also defines and/or explains whatever usage of medical terminology is within the material. When I was diagnosed with Lofgren’s Syndrome (pre-Google and a decade before librarianship was on my horizon) I was outraged by one specific use of medical terminology. “It’s mostly a self-limiting disease” is not the phrase to use with someone with extreme fatigue and in pain who immediately interpreted that along the same lines of self-limiting beliefs. The specialist certainly never intended to say I was standing in the way of my own healing from a disease but that’s exactly what I heard!
ePatients, it seems to me, do not conceive of themselves as “consumers” largely because of the one-way transaction implicit in that term. ePatients do not “consume” healthcare or health information; they “engage” with it, they “participate” in it, they “co-create” it. And in doing so, they want to participate in understanding their healthcare using the very same research, guidelines and other material that informs the rest of their healthcare team.
This does seem to be a clear distinction with intent and purpose regarding health information and healthcare. Traditionally, patients are often given information from a health care provider to take home (usually patient education handouts) that can then serve as launching points to further research by those who understand the handout (not always a given with the challenges of cultural and health literacy).
Are e-Patients the 21st century face of consumer health? A specialized subset? What is meant by the term e-Patient anyway? The definition of an e-patient is one who is “equipped, enabled, empowered and engaged in health and health care decisions” according to e-patients.net founder Tom Ferguson. This differs from Pew Internet’s usage of the term e-patient to encompass everyone using the internet to look for health information in their 2008 report.
Can we assume that because people are able to and are searching online for health information that they are also empowered and engaged in health care decisions? I see that to be a very far stretch, especially given the questions raised about Ask Me 3 not being found effective and another study showing that unless patients are highly involved in their healthcare they don’t ask questions as they’re sitting there half-naked.
What do we make of the fact that, according to a study I don’t have access to in order to read it myself EDIT: I shouldn’t blog at night after a long week at work, mistype the journal name, then have a friendly librarian (thanks Jennifer!) point out it’s OPEN ACCESS (major duh.. or April Fools? when people are given complete information about options they make… poor choices slanted towards short term benefits instead of long term goals?
That right there is why the plethora of health information on the internet, both good and bad, can never replace qualified personal medical advice.