Fitting together @_boris, Flickr

Fitting together @_boris, Flickr

Ever since completing my study of individuals with chronic lyme disease [1], I have been working on (and working out) ideas around several tools that I believe can improve the online experience of patients looking for information relevant to their condition. One of the surprising findings of our study was the extent to which the people we spoke with (most of whom had become experts in searching for information relating to their illness) triangulated data before trusting it. This goal of triangulating data was not just an individual act, but also a social one. For example, one participant reported how forum members  were reminded to provide multiple types of evidence for new information,

even regular posters, if they post about something that’s a little outside the [minority model] mainstream… they will say, ‘Do you have any studies to back that up? … why is that true for you?’

while multiple participants compared the type of evidence they were getting from different resources. We also found that people placed different amounts of trust in personal reports and research studies (some participants trusted one more, others trusted the other more), and that this was influenced in part by what they believed about their condition. All of this points to the importance of exposing information about where different viewpoints are found (across types of resources), helping people to judge the trustworthiness of online resources, and helping people to identify different types of resources when searching for information.

Unfortunately, I have struggled to find students who want to work on theses sorts of tools (perhaps a topic for another post), and our work has not proceeded as quickly as I would have liked. However, I was very pleased when a former student pointed me at the new site, Medify, which explicitly links research studies, personal reporting. Their page for Lyme Disease (or any other condition you care to search for) is a great example of how one might support triangulation. They link directly to studies about the conditions, list institutions, related conditions, and top treatments. They also include a patient community for sharing search results and discussing them. It’s great to see these things juxtaposed, and made so accessible (in terms of presentation). However, it would be nice to seem them take the next step and integrate patient-generated evidence and opinion into their presentation of information about conditions, treatments and so on.

[1] Jennifer Mankoff, Kateryna Kuksenok, Sara Kiesler, Jennifer A. Rode, Kelly Waldman (2011). Competing online viewpoints and models of chronic illness CHI ’11, pp. 589-598.