How does all that misinformation online affect Lymies?

I have been working toward this for two years now, and I can finally talk about the work we’ve done with the help of many volunteers. My paper, “Competing Online Viewpoints and Models of Chronic Illness” will be published at the premier venue in my field, the 2011 conference on Computer Human Interaction. For those of you with a medical background, in my field, this is equivalent to a journal publication in impact. Needless to see, I’m very excited to have finally gotten the work to this point, and extremely grateful to all of my co-authors, who helped me with every aspect of the research and writing, and all of the lymies who helped us to collect the data on which the study is based. I could go on for a long time about the personal accomplishment this represents and what it means to me (and I may in another post), but what I want to do here is say a little about what we did.

I am not a doctor, and however much I would have liked to do so, I am not qualified to conduct research that can identify a cure or otherwise directly affect the medical experience of individuals with Lyme disease. Rather, my area of specialty is information technology, and how people interact with it. Because of this, my work focused on how people with Lyme disease use online information in the course of their illness. I specifically wanted to understand how people negotiate the competing viewpoints present online (consider the contrast between the IDSA/Mayo Clinic/CDC/Wikipedia style information and that found on websites such as CALDA and ILADS). I knew that I personally had encountered both sets of information when I was diagnosed, and as a result I ended up putting my trust in doctors who did not treat me correctly. In my study, I wanted to document what happened to others, and identify possible solutions to any problems we discovered. My next step will be to begin to implement these solutions.

So what did we find? We found many examples of people who grappled with the mix of information online. Surprisingly, the kind of information that people trusted seemed to be affected by their diagnosis experience/initial beliefs about Lyme disease:

  • One group of people tended to be diagnosed relatively quickly (average of 5 years) and started out believing the IDSA. These people (I generalize, of course) wanted to find studies and other evidence supporting ILADS before they switched what they believed. I was in this group, and in 2007 (before Weintraub’s book or the hearings or any number of other things) it was easier to believe the IDSA’s evidence, and their assurance that I could easily be cured, than anything else I found out there.
  • Another group was diagnosed slowly, and reached diagnosis without buying into the IDSA model (average of 10 years until diagnosis). This group was much more swayed by the stories of other patients, they trusted people who’d been through what they went through over studies. Although this group struggled with misdiagnosis and illness much longer, they tended to gravitate towards ILADS beliefs and treatment much more quickly.

We also found a very sophisticated approach to online content in which people worked together to identify new information, guard against predatory posts (e.g. salesmanship disguised as information) and find the science behind claims being made. Not only that, our study demonstrates what is probably obvious to many in the Lyme community: We are a community, we help each other, and we are working to make it easier for everyone with Lyme disease. Participants described helping others through suicidal periods, writing about their experience to help others, creating new support groups, activism, and many other small and large acts to protect and help the Lyme community. In the words of one participant:

I would risk my life to get the truth out, and to get people who are suffering from this disease … the right kind of treatment, just information…. I feel really strongly about that.

I certainly didn’t have to risk my life to complete this research, but it was my way, my first attempt, however limited, of trying to give back to the Lyme community. Our follow up work will be far more technical: trying to create new interfaces for searching and organizing online information that can expose the presence of multiple viewpoints and people make informed decisions through credibility and triangulation.

Thanks again to all of you who helped me to get here.

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