Data collection in the open: Using blogs for research #IHSRC35

Yesterday I gave a presentation at the International Human Science Research Conference (#IHSRC35). I was a little nervous at the beginning because my presentation did not make any mention of  Heidegger, nor any other philosophers for that matter. The keynotes for the conference appear to be mostly from clinical psychology and philosophy – where the presentation style is mostly people reading academic papers from the podium, and questions are a collection of challenges that involve a lot of references to other typically dead white male philosophers. I find myself often asking – is there no critical perspectives within phenomenology? Where are the women’s and cross-cultural voices in this dialogue? Anyways, that is not what this post is about.

I found myself presenting in a large room (the same hall as the keynote) with about 40 or so people spread throughout the room.

I decided the focus of my presentation was going to be to provide an insider perspective on the ethical ways in which to use blogs (and specifically illness blogs) in research. I began the presentation by disclosing my insider status as a blogger and as a breast cancer survivor.

I highlighted that blogs that are publicly available (so not password protected) are articles of self-publication – and can be used by anyone in their research, and as such, they should be cited as you would cite any other publication. However, within the medical professions there is a cognitive dissonance when the blogger is seen as both a public text and a private patient account of illness. I then went on to talk about appropriate ways to thank and attribute the work of bloggers.

The presentation seemed to resonate with a lot of people. I had several people comment that they were on ethics boards and they were trying to navigate how to ethically use blogs in research. I met the lovely Taoist Harlequin who happened to be in the audience.

My One blogger says … slide was challenged by one audience member saying that in academic articles we do say things like “the scientists say” and then cite them. Of course I didn’t have the right response to that at the immediate moment, but in thinking about it I realize the problem I have with it is that “the scientists” are academic peers, where “one blogger” reads as someone in a subordinate role, and so I feel there is an issue with power dynamics and the silencing/non-attributing of bloggers voices.

One of the participants asked about using blogs as a way to help prepare for face-to-face research interviews. She won’t be interviewing the bloggers, rather others that are affected by the same illness. She is using blogs as a way for her to develop a better understanding of the illness experience prior to doing interviews. The blogs may be quoted within her academic papers, but the bloggers themselves are not directly engaged within her research.

My recommendation in this case is that after academic articles are written, leave a comment on the blogs (or email the bloggers) saying thank-you for sharing their experiences on their blogs and provide a copy of the article if it is to be published. There is no need to get advanced permission or consent in this case because the blogs are publicly available. Bloggers make them publicly available so that people can use them, so most bloggers will be flattered to learn that the effort they put into blogging has been useful for others.

I was encouraged by this presentation to do more investigation into the ethical and moral issues in this case (e.g. why does using ed tech blogs as a data source for discourse analysis seem much less offensive than using breast cancer blogs for similar analysis)? It is something I need to explore further.

Today I found myself in a bit of a weird situation. I went to a presentation where someone was talking about illness experience as understood through illness blogs. She was giving her interpretation of what the bloggers were saying. She raised some good questions about not understanding why illness bloggers chose to share such intimate details of their suffering. It was interesting listening as various academics tried to relate the blogging experience with different theoretical constructs, as they tried to make sense of the phenomena. I found myself wanting to say .. “hello, I’m in the room, just ask me” … sure I didn’t have the medical condition that was being studied, but I could definitely talk to the reasons why bloggers share the details that they do. It is weird being an insider in a room full of outsiders trying to make sense out of different aspects of the experience. I found that they often missed many of the nuances as they tried to interpret something that they could observe on a sensory level but not feel on an emotional or embodied level. I did feel that when I spoke the common understanding – the compassion – that was spoken about in the first keynote wasn’t there. We were talking more through each other rather than with each other – making me wonder if this is was just another game of academic posturing?

Wondering if anyone else has experience with interdisciplinary methodology conferences? Do the different paradigms of presentation style but also post presentation commentary clash?

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