Struggles when reading outsiders who write about the breast cancer blogophere

In the process of preparing my ethics proposal I need to review the literature related to illness blogs. I am finding that because a lot of women with breast cancer write blogs, largely because it is one of the biggest and most accessible illness blogospheres (blogging communities). This means that a lot of researchers, when they are searching for a representative model, chose to study breast cancer blogs. This also happens with the #bcsm hashtag on twitter – as it is one of the longest standing and most active illness-based social media communities. Interestingly, I’m finding articles from a variety of different fields of study (although none of them education) including: nursing (most are here), oncology, communications, journalism, and social media (sociology or anthropology).

One of the challenges I’m running into when I read the articles is that they are written by researchers looking into the community. They are written by outsiders. Not just outsiders to the breast cancer community, but often the people writing the articles are outsiders to the blogging community. I go to look them up and they have no web presence.

I struggle with the emotional strings associated with the reading. They draw on quotes from breast cancer blogs to prove an academic point, but I find that I understand so many of the nuances behind the quotes that I feel the research is superficial. It often does an analysis of a single aspect of what is happening, but that aspect is happening in a context, and often that context matters. I also feel the emotional pull because I can completely relate to what quoted blogger is saying. I wrote a little bit about this on my post about my emotional reaction to reading about narrative analysis that uses a breast cancer pathography as an example.

I struggle because the researchers are often missing the point behind blogging itself. It is often very clear from the articles that they don’t really understand the phenomenon they are studying.

I struggle with the ethical challenges in the publication of bloggers quotes (often very lengthy block quotes) in academic journals. I am happy to see that for the most part the bloggers are credited directly for their words – in that they are references exactly as the blogger choses to be identified in their blog’s About page. What I wonder about is that if the academics are not bloggers themselves, do they notify the bloggers that their posts are being used? In academic spaces, the currency of appreciation is in the citation. That is, academics know that their work is having an impact when their articles are cited by other academics. In the world of the blogosphere, the equivalent currency of recognition is a pingback and/or a tweet with a mention. However, if the academics are not participating in the space they are studying (e.g. any form of blogosphere), they have no way of knowing the currency of the participants, and no way of indicating their appreciation for the work through an appropriate currency. Citing my blog does not help me academically (it isn’t considered a publication, and therefore is not considered a citation), and citing my blog URL in the reference list does not improve my site’s statistics (hit count, etc). There also is no way for me to know that my blog was quoted. I see this as a particularly large problem when the academic is drawing on a large amount of block quotes to prove their academic point. In some ways it feels a little like exploitation if the blogger in question is not notified. Now, in some cases the blogger may very well be notified (although this is in no way required by ethics), but that is also not communicated within the article. Perhaps we need to start using a footnote within the article to inform the readers that the blogger being quoted was notified of it (permission is not needed as public blogs are in the public domain).

On a side note, for anyone who is quoting blogs or other websites, you might want to take a look at The Way Back Machine. You can put the URLs you are quoting directly into the Way Back Machine to ensure that the posts are archived – and then you can retrieve them based upon the archival date if you need them (too bad APA dropped the retrieve from date!).

Since I have yet to see some insider research within this space (there must be some, I just haven’t come across any yet), it occurred to me that this is an important thing that I bring to the table with my research. I’m an insider. I can appreciate the nuances of both what is being said in the blogs, but also how to ethically and responsibly do research within this community.

Do you do insider research? How do you feel when someone else who is an outsider writes about you?

What do you think about the ethics / courtesies relating to quoting bloggers in academic articles?

2 Comments

  1. More usefully, I experience medical interviews as occurring in a “place” outside myself. Separated from my support base of tacit knowledge (which may be characterized as “part of my problem”) I find myself in a whirl of inadequate explanations as if the whole structure of myself was built on nonsense. I often hear the subtext “yes but in WORLD we all live in you know your thoughts and conclusions are distortions and misunderstandings.”

    It could be that blogging allows us to reside in a space that is our own interpretation modified by how we know to present ourselves at the edge of vulnerability and without the pressure of interrogation that seems always to want to correct us. Outsiders can’t immerse themselves entirely in the other. No matter their intentions, they “sound” wrong, as if they were writing us from a list they learned.

    Found this while searching “Narrative research: Constructing, deconstructing, and reconstructing story” http://www.psyking.net/HTMLobj-3827/Wertz.Phenomenological_Research_in_Psychology.pdf

    Were you not cautioned about picking difficult subjects to study as a child:-)?

  2. Being cynical, my assumption is the medical system sees the patient’s voice as no more real than the patient’s feelings. We are all just expressions of the disease and probably not even knowable anyway. Broken and unreliable, how could we be useful? Research is about the needs of a person’s career to solve a problem the researcher has created to get attention. There’s no intention change the world or help people.

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