Our HCSM group offered a wide range of primary web choices for health information from our August 15th chat, captured below:
- Professional Organizations and related online publications (e.g. American Medical Association, AMA Medical News; American Academy of Family Physicians)
- Medical Journals
- Research Hospitals (e.g. Mayo Clinic)
- Government sources (e.g. HHS, CDC)
- Continuing Medical Education sources
- Patient Discussion Forums
- Disease Condition Associations (e.g. American Diabetes Asso.)
- Medical conferences
- Medical librarians
- eMedicine (medical reference source from WebMD)
- Disease condition bloggers
- Twitter doctors (e.g. @KevinMD)
- Other Trustworthy Twitter sources
- Clinical and Policy resources (Mark Ryan provided his personal list of news and policy Twitter sources: http://twitter.com/RichmondDoc/medical-news-and-policy/members )
- News sites
- Google Scholar
While there was wide diversity among our HCSM chat participants on where they looked for reliable health information, there were some strong opinions backed with study data about superior sources. Patricia Anderson (@pfanderson) cited new research confirming that med students researching on Google Scholar and on UpToDate performed better than using MEDLINE (Source: http://pmj.bmj.com/content/86/1018/459.abstract).
Sources with a strong track record of reliability or distinguished conduct were heavily favored, as with the Mayo Clinic. Some mentioned that they gravitated towards “trusted online sites related to health care issues,” but many people didn’t disclose what constituted a trusted source. A clear turn-off were sites that were too heavily slanted on the marketing side. Others stated that only the most basic of health and science information is gathered online given the Web’s intractable nature in sorting out “trusted opinion from [the] fringe.”
It is this thicket of often unqualified information that prompted H. Jack West, MD (@DrWestGRACE) and Kelly Young (@rawarrior) to form their own websites with reliable information (http://cancergrace.org/; http://rawarrior.com/). Young stated, “Rheumatoid arthritis information was not readily available to patients, and with all the misinformation floating about RA, I knew I could help solve this.” Young added that she wanted to bring the patient’s point of view to the fore, so offering a web site of her own made sense. (Given that HCSM’s own Patricia Anderson wrote a book on online health information, we certainly invite her to weigh in on this topic.)
In response to the follow up query on whether one’s own doctor provides online information, only one group member reported that her offline endocrinologist provided online sources and links, though this expert wasn’t online with a professional web page.
As a corollary discussion, Mark Dimor (@MarksPhone) observed that while we have our own preferences, the general public will vary in its choices based on the health literacy status of each person: “Someone newly diagnosed w/lung cancer goes where if they have only a high school education? A college grad goes where first? Each demographic is different.” Indeed.
If the hurdles to accessing online health information include not being able to differentiate the charlatans from the honest folk, it will take a considerable amount of time before the general public approaches the cyber-well for a long drink. As it stands, our own HCSM clan, a sophisticated lot if there ever was one, holds a diversity of opinions on where to seek online health answers. If the kids at the head of the class haven’t achieved uniform consensus, there is little to suggest that those less knowledgeable will know where to go. That is perhaps where our work begins: to cultivate clear reliable sources that we can agree on and to point the way for our less savvy friends. If we can’t trust ourselves to do this, then who?