Some Advice on Doing Personal Medical Research

January 19, 2011 Dennis D. McDonald

Recently I was asked for tips, on behalf of a friend, for doing personal research into a medical condition of a friend’s son. Since I’ve had past experience doing research in connection with my own family, I provided a few general tips:

The first place I would check would be national associations or public interest groups. They frequently make an effort to summarize recent research. One thing to look out for is whether or not they seriously distinguish between their political advocacy efforts and their research support efforts. The more separation the better.

I would be wary of amateur newsgroups, forums, chat groups, and Facebook-type groups that do not have strong professional affiliations. Such groups are sometimes hijacked by people with an “axe to grind” and can be the source of potentially dangerous folk remedies and unverified clinical experiences. (I have a very practical question about such sources: are you willing to let your child’s medical treatment be influenced by someone who insists on anonymous chat group postings?)

Definitely check out the online resources of the NIH’s National Library of Medicine. NLM provides a variety of resources on specific topics and also does a good job of providing public access to Federally funded research via several public databases. NLM is a national treasure that more people should be aware of.

Closer to home: these days public libraries subscribe to a variety of online database search services that are topic specific and they sometimes make these search tools available to community members via the web. The advantage of this type of service is that the available professional abstracting and indexing services usually target professionally respectable information sources (e.g., professionally refereed journals) and are consistently indexed.

The second point is important. While I’m a big believer in collaboration, open discussion, and online information sharing, I’ve seen examples where information communicated online, e.g., anonymous reports of drug reactions, can have negative consequences if misinterpreted or overinterpreted. For example, people who have an “axe to grind,” when they start “grinding” in public, sometimes lose objectivity. This loss of objectivity can result in communicating incomplete or incorrect information.

I’m not suggesting that using community and social networking resources to obtain personal medical information is always inappropriate. I am saying that, when it comes to serious medical conditions, you need to be very very careful about what you read, especially if the subject of interest is the health of a child. For example, I remember the online comments and discussions associated with the CDC’s national H1N1 vaccination planning discussion forum that I wrote about in Public Dialog and the 2009-H1N1 Influenza Epidemic. Anti-vaccination advocates tried to monopolize several of the conversations in a sometimes annoying fashion. Someone coming in “cold” to the discussion, lacking the background information suggested for participating in the discussion, could have come away with grave — and unjustified — concerns about the fundamental safety of anti-flu vaccinations.

There are many examples of partial or incomplete information (and misinformation) floating around the web, which is why I recommended to my friend the importance of seeking out reputable sources. This doesn’t totally protect the researcher from running into problems, of course; I well remember the confusion I faced years ago in researching potential side effect incidence of different drugs in connection with my own family, and I have academic and professional experience with statistical methods. I can’t imagine how someone without knowledge of research methods would fare in a similar situation, which is why I so strongly recommended seeking out and sticking with reputable sources.

What do you think about this? I’d appreciate reading your thoughts in the comment fields below.