data collecting in the open: using blogs for research

[email protected] @rjhogue July 2016

Data Collection in the Open• Using blogs for research

Presented by: Rebecca J. Hogue (@rjhogue, [email protected])

uOttawa.ca

Faculté d’éducation | Faculty of Education


Bio• PhD Candidate in Education

at uOttawa• Associate Lecturer at uMass-

Boston (teaching instructional design)

• My research involves studying illness blogs – more specifically breast cancer blogs


Disclosures• I am a blogger

• Rjh.goingeast.ca• Bcbecky.com• Goingeast.ca

• From this perspective, I am an insider

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Disclosures• I am a breast cancer

survivor

• I blogged throughout treatment

• Bcbecky.com

• This also makes me an insider in my research


Who are you?• Blogger?• Reader of blogs?• Healthcare provider?


Context• I did my initial PhD work in Canada with the uOttawa

Department of Family Medicine, however, now I’m a Canadian living in the US

• My diagnosis and treatment all happened in the US medical system

• Illness blogs – blogs written by patients or caregivers that speak to the lived experience of illness

• ePatient – empowered, engaged, equipped, enabled Patient


Ethical considerations• What is ethical use varies by discipline

• I am examining the different ways in which ethics have been applied to breast cancer blogs

• Please feel free to ask questions at anytime during the presentation


Ethical Consideration: Public?

“we consider the blogs used to be public” (Clarke & van Ameron, 2008, p.249)

Are blogs public?• Blogs are a form of self-publishing• They are living pathography

Reference: Clarke, J., & van Amerom, G. (2008). A comparison of blogs by depressed men and women. Issues in Mental Health Nursing, 29(3), 243-264. doi:10.1080/01612840701869403


Ethical Consideration: Informed Consent• Counter to the public argument

• Kozinets (2015) challenges that social media authors (discussion forums, twitter, blogs) have not consented to have their texts / contributions to be used for research purposes


Morale Courtesy: Permission / AttributionSeveral articles included acknowledgements that thanked other academics (e.g. supervisors, peer reviewers) in helping to publish the paper, but they failed to thank all the bloggers whose text they used in their analysis.

• To acknowledge an academic = citation• To acknowledge a blogger = pingback/link

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Blogging is unpaid work

Blogging takes a lot of work. For many bloggers it is a labour of love – it is completely unpaid and often unrecognized. As researchers who benefit from the freely available data provided in blogs, we should at least acknowledge the contributions bloggers make to our research


Ethical Considerations: Human subjects research

Does the researcher influence what is said in the blog?

If you just use publish posts: no

If you talk to the blogger: yes

As an insider, my research MUST be human subjects research


Ethical Considerations: Attribution• Practices are very different

depending on discipline

• Health researchers are challenged by the need to protect “patient” privacy, the sense that bloggers are “patients”, and the public nature of blogs

Image by Stockmonkeys.com


One blogger says …

“One blogger, who was nearing the end of treatment for breast cancer, recapped her weekend with her readers and talked about how she is beginning to see more ups than downs in her days. She began by giving the example that she was able to go to her daughter’s ballet recital at her school...” (Anderson, 2014)

She goes on to properly cite the quote, so you can figure out that the blogger is Jennifer Griffin (Jenngriffinblog.blogspot.com)

Anderson, A. G. (2014). Cancer bloggers’ styles of humor while coping with cancer. Master of Arts. Masters Thesis, University of Texas at Austin, Austin Texas.


Ethical Consideration: Attribution

Stories have to repair the damage that illness has done to the ill person sense of where she is in life, and where she

maybe going. (Frank, 2013, p. 53)

• Researchers who quote blogs without attribution (citing privacy of participants) are taking away the voice of the blogger

• Attributions should use the identity that the blogger uses on their blog

Frank, A. W. (2013). The wounded storyteller: Body, illness, and ethics. University of Chicago Press.


Tips for Contacting bloggers• Some blogs have an about page that provides an email• A comment directly on a blog post or page is the most

common way of reaching out to bloggers• Other social media

– Many bloggers have a Facebook page– Many bloggers use Twitter

• It is not correct to assume that bloggers don’t want to be contact when they don’t share email addresses – there are practical and safety reasons for not sharing emails


Ethical Consideration: Unintended Disclosure• As a blogger, my blogs are my story – not someone

else’s – so I philosophically do not share stories of others without their explicit permission

• As a researcher soliciting information in the public domain, I need to filter for disclosures by others about others … this gets really hazy when bloggers are caregivers writing about others (often children) with critical illness


Ethical Considerations:International Boundaries• Participants can come from anywhere in the world• Context is unique to each participant• What is ethical / morale may be different across

cultures

• Participants might use the blog / comments as a way to ask for help


Research Challenge• Unlike print published media:

Bloggers have the ability to change content at any time

• One way to ensure a snapshot is to post the page to the Way Back Machine (https://archive.org/web/)


Ask me about blogging• What do you want to know about bloggers? • What do you want to know about illness bloggers?