Netnography

I went to a public seminar presented by the Joint Centre for Bioethics at University of Toronto(see more of their seminars here). The seminar was entitled “Internet Forums & HTA : Social Media as a Tool of Public Engagement” by Rosanna Macri, graduate of the Applied Bioethics Master’s Program.

Based on the title, seeing as I had no idea what HTA was, it sounded like it could be pretty relevant for any future projects involving social media and accessibility to health information. But as it happens, HTA stands for Health Technology Assessment, basically whether Health Technology (any means of prevention, diagnostics, evaluation or treatment of illness/disease) is worth its while or not, especially within the context of public funding. Now, fascinating as that is, I can’t say I would have gone, had I known.

In writing this blog, I have become very interested in how information becomes available on the internet. Throw public engagement in there and I’m all ears.

We’re swimming in information available on the internet, so I’m interested in helping people filter what’s on the internet and find refutable sources. Not really an easy task, and when it comes down to it, we probably most “google” a question when we have one, leading us largely to agencies that know how to make the search engines show their stuff first (and I’m not just being paranoid about it).

Though not very applicable to my interests, Macri presented an interesting project that she was part of that involved assessing the potential for public funding for a Celiac’s disease blood test (rather than the more intrusive before and after gut biopsy that requires resumption of a gluten diet and then comparison to being on the gluten-free diet).

Now, for the public engagement component she printed up some questions and answers on support group forums for Celiac disease, lumping the data into themes. Presto! No transcribing, I know a few happy researchers with less carpal tunnel. I did like, however, how this is going to seek opinions of people who have really lived the disease or have a keen interest in it.

Public Engagement?

The question is: public engagement? Is that not a two-sided exchange? In this study, the participants were not made aware that they had been quoted nor of the results of the study. Now, I’m NOT starting to pretend that when you post something on the web you don’t already know that you’ve given up your rights to it and make it public, because you do.

I do not think that, ethically, there’s much of an argument that huge wrong came about as a result of this study, but I think it would be a long stretch to consider this an engagement of the public voice. I certainly also do not mean to undermine the internet as an excellent means to reach participants in a study who would not normally be able to participate, or as an after-the-fact means of publicizing the research data.

Netnography is said to be ethnography “that analyses the free behaviour of individuals on the internet that uses online marketing research techniques to provide useful insights” (Wikipedia). In order to reach younger participants, I think it really is a very good way to solicit information. The concept came out during the discussion questions after the presentation, where questions were raised on ethical implications of research performed this way. Do we need to set up some ground rules? How public is social media? How do you engage people in social media beyond “likes” and reposts? What forums or websites do people look to for information? How is this representative of the general population?