Earlier today, I came across an interesting post on one of my must-read blogs, e-patients.net. John Grohol wrote an interesting review of a report I wrote about recently, The Wisdom of Patients: Health Care Meets Online Social Media. Grohol calls it a “nice overview of the current state of Health 2.0.” However, he does feel one of the report’s implications, that “old-style virtual support groups didn't result in ‘practical solutions to chronic health challenges’” is really “off the mark.”
Jane Sarasohn Kahn, the author of the report said: “[i]ncreasing numbers of people are reaching out to others for more than the kind of support they might have found in the CompuServe health interest groups in the 1980s. They are finding practical solutions to health challenges.” If Kahn meant to say that the old-style e-mail listservs and online bulletin board did not provide people with “practical solutions” to their problems, then I would have to agree with Grohol. One of the powerful benefits of these early support groups was that people received answers to questions they were afraid or did not know to ask their health providers. In many cases, the advice they received from others was invaluable.
This is why a 1995 book by Tom Ferguson, MD, Health Online: How to Find Health Information, Support Groups, and Self-Help Communities in Cyberspace, was so valuable. One of the most useful parts of the book was a list of online support groups that provided customized answers to users’ questions regarding health.
In fact, an e-mail based-group ACOR, the Association for Online Cancer Research, was founded the year Ferguson’s book appeared. Although technology has changed, ACOR is still firmly e-mail based. Gilles Frydman’s, ACOR’s founder believes e-mail remains the killer application. In a reply to Grohol’s post he said:
“There remains only one universal internet-based application and it is not web-based. Email remains the only way anyone can communicate easily via the internet. All the smartphones can now deal with it in simple and usable ways, unlike the still-clunky mobile web-browsers and their inability to universally render a given web page. [Note: The iPhone is helping to improve online Web browsing.]
All of this explains why we have constantly tested many very exciting web-based services over the last 15 years and have consistently decided that ACOR remains firmly email based. I am sure that in the future we will add many mashups and innovative services to our offerings but they will not replace the practicality and universality of email -mediated exchanges.”
Frydman makes an interesting point. Overall, social networks, blogs and other “social” technologies have accelerated and improved the Web’s usefulness for people seeking health content. However, online bulletin boards and listservs have always been and remain vitally important. This is especially true because many use e-mail, a bland technology that's familiar to all -- no matter their skill level or familiarity with computers.
Image Source: Utah Valley State College
Comment Preview