When you use my data, please say thank-you

I’m working on a systematic literature review based upon researchers that use breast cancer blogs. This particular review was inspired by a comment written by Caroline on my blog post about the Usage guidelines for researchers who use blogs. In the comment Caroline mentions that “I would never have thought my blog could be used in research.” This has inspired me to look at how researchers are using breast cancer blogs, so that I could better highlight the different uses of the data. On June 16, 2016 I did a Google Scholar search for articles that mention “breast cancer” and mention “blog” or “weblog”. I listed the results from the first 20 pages of articles in a spreadsheet. I’m wading through them now alphabetically. Many are false positive hits (e.g. the articles don’t mention breast cancer blogs in any way). There are, however, some very interesting articles and I’ll be posting some of my reflections on the articles as I go through them. I’m particularly intrigued by the variety of fields of study that use breast cancer blogs in their research (e.g. feminist studies, communication, public health, nursing, computer science). I’m also interested in the different approaches to the ethics used in by the different fields of study.

I was further inspired by a comment left by JF on my post about citing versus anonymizing blogs, where she highlights the importance of recognizing the labor that goes into writing blogs. I think this is a point I feel the need to emphasize. In many cases there is a space in the publication to acknowledge and thank people who helped with the article. Often researchers use this to acknowledge those who provided peer reviews or other academic guidance in the research. For students or new career scholars they recognize the guidance of their supervisors. I have yet to see an article (I’m going through alphabetically and I’m only on D, so there is hope yet) where the researcher acknowledges the work of the bloggers. To researchers, public blogs are seen as a free data source that they can use for their research. They seem to miss that this “free” data source is the result of 1000s of hours of labor on the part of the bloggers they are studying. They should at least add a “thank you to the bloggers who contributed their lived experiences that provided a source of data for this study”.

And so, I put this out there for anyone who uses any of my blogs for research purposes. I don’t feel the need for you to necessarily ask my permission, as I am posting publicly. I do, however, ask that you in some way acknowledge that the “free” data source you are using is the result of many hours of my time. I give to you willingly my experiences, all I ask is that you say thank-you.

Feature image: By Ashashyou (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

  • Becky


  • Rebecca, makes sense your story should be acknowledged. Telling your experiences to others is both a sharing/bonding with others exchange and part the process of curing yourself by rediscovery. If you put it in a bottle and stood in your wagon at medical conventions it would be a great success!

    This was passed onto me by a friend:
    How to Work With the Story in Therapy
    by Leslie Durr, PhD, RN, PMHCNS-BC

    You might have to join the newsletter list which is free.

    Blogging is also a form of mentoring and paying forward into a community.

    Thanks for the blog.

  • You quoted me! I’m overjoyed! No one ever quotes me…

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