Web 2.0, Empowerment and Medicine
It’s not just about Google anymore. Something called Web 2.0 is changing the way you can find healthcare information using your computer. If you haven’t heard of it you might take a little time to browse, chat, twitter, and text.
Some of my favorite ‘portal’ websites for tracking mainstream health interests include Web MD, the Centers for Disease Control (CDC), MEDLINEplus, and HealthDay. (It isn’t all gloomy reporting, either. Today’s wonderfully quirky headline : In High-Stakes Stock Trading, Finger Length Matters Study finds testosterone exposure in womb creates long ring finger, financial success.)
At each of these sites, you can follow condition specific research, for example new studies on diabetes, rheumatoid arthritis, or Alzheimer’s. Additionally, many of these sites have RSS you can subscribe to which notifies you when new articles are posted.
No one values your life as much as you do.
Web 2.0 takes the whole portal or ‘information aggregation’ process a step further. If you’ve ever looked anything up on a wiki site such as Wikipedia, then you know something about Web 2.0. The new generation websites leverage and publish information that people living with various conditions have researched for themselves.
Patients compare doctors, treatments, studies, drug trials, and sources of data. Unlike first-generation condition support websites, Web 2.0 sites have contributors who often work together like other researchers do; it’s just that these researchers are living with the conditions they are trying to understand in time to help themselves.
They’re not doctors, but their literacy, urgency, and experiences make compelling reading.
Sites like e-patients.net feature white papers, reviews of patient advocacy, and positive living focus. (This week featuring physician Stanley Feld’s, “The role of patients with chronic diseases and their physicians must be clear to both patients and physicians. Physicians are coaches. Patients are players.”)
I read The Health Care Blog for its coverage and analysis of the politics of healthcare, and the fact that it is a virtual linkfest to things I would likely not have otherwise encountered. (The Wall Street Journal has a healthcare blog? Who knew? And, it’s good!)
The focus at ACOR is cancer and oncology: “The heart of ACOR is a large collection of cancer-related Internet mailing lists, which delivered over 1.5 million e-mail messages last week to subscribers across the globe. In addition to supporting the mailing lists, ACOR develops and hosts state-of-the-art Internet-based knowledge systems that allow the public to find and use credible information relevant to their illness.”
These people-centered living-with-a-condition sites pool sources and resources in a way that changes the balance of power by changing the patient’s relationship to the care delivery system. Addressing and reducing the sense of helplessness is one of the strongest responses to stress we can willingly engage.
All of this comes with a word of warning of course. The Internet is no place to be gullible or naïve. Don’t give out personal information of any sort, ask your physician about the opinions and sources you see online, and take care to look into whether sites are receiving grants from foundations such as the Robert Johnson Woods Foundation or other reliable or nationally known funding sources. There have been cases on other sites of spoofing, where person’s pretending to have the issue at hand foist drama and heartache on other participants.
Be wise and be wary, and empower yourself with research.
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© 2011, The Magazine of Yoga, LLC.