Data collecting in the Open: Using blogs for research

Rebecca.Hogue@uOttawa.ca @rjhogue July 2016
Data Collection in the Open
• Using blogs for research
Presented by: Rebecca J. Hogue (@rjhogue, Rebecca.Hogue@uOttawa.ca)
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
3

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 / Attribution
Several 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
.

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?

Data collecting in the Open: Using blogs for research

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