In association with Simon Fraser University & Vancouver Coastal Health Research Institute
Simon Fraser University
Great Northern Way Campus
555 Great Northern Way
Vancouver, BC, Canada V5T 1E2
tel: 1.604.268.7306
fax: 1.604.268.7309
email: act4hlth@sfu.ca
website: www.sfu.ca/act4hlth
BC Cancer Agency Project: The information needs and information-seeking behaviours of
young women with breast cancer in relation to the Internet (Theme I)
Investigator: Ellen Balka
Research Partner: British Columbia Cancer Agency (BCCA)
Background
The Internet is increasingly being promoted as a means to disseminate health information to
patients and their families; however many such programs are implemented with seemingly little
understanding of how people actually seek health information. Building on a British Columbia
Cancer Agency (BCCA) initiative which explores the potential for telecommunications
technologies to increase access to information, education and psychosocial support for people
diagnosed with cancer, our project will allow us to achieve a fuller understanding of the ways
health information is sought and used by lay people. Researchers explore two assumptions
inherent in claims made about the benefits of Internet health information: that people can gain
access to the Internet easily, and that having gained access, they benefit from the information
they find. These assumptions overlook significant socio-technical issues, including: literacy levels;
English language skills that may require knowledge of medical terms; the ability to act on
received information; support needed to located or interpret information or to discuss options;
physical and/or financial challenges; and a range of other potential barriers inherent in the
technology itself and Internet-delivered health information. There is little doubt that the Internet
promises a great deal, but before its potential can be realized, more research must be done on
how the technology can be matched with the actual health seeking behaviour of ordinary citizens.
Failing to do so will result in the implementation of inappropriate programs and services that will
not or cannot be properly utilized.
Project Description
This project explores the extent to which telecommunications technologies are meeting the
information needs of young women (45 or under at the time of diagnosis) with breast cancer. It is
specifically interested in the information-seeking behaviour of these participants, which existing
literature overlooks. In addition, the project is also interested in “information needs” from the
perspectives of women who have cancer, since much of the current literature is written from the
perspective of the health professional and what s/he could provide the patient in a clinical setting.
The study attempts to both document how the internet is currently used by this population for the
consumption and production of health information. Insights gained from the project will also be
used to make recommendations about how the internet might be used in the future to meet the
informational needs of the study population.
Methods:
Participants write about their experiences with information-needs (what they felt they needed,
from whom or through what mechanism) and information-seeking (where they went, what they
found and didn’t find) during the course of their dealing with cancer. There are suggested topic
areas under which they may write if they wish to guide participants. Their “stories” are emailed to
the researchers who, using a grounded theory approach and coding within NVivo, extract relevant
themes. Once saturation is achieved, selected participants will be using online focus groups in
order to verify, strengthen, and elaborate on initial findings from the email narratives. At this point
a first phase report will be prepared.
In association with Simon Fraser University & Vancouver Coastal Health Research Institute
Simon Fraser University
Great Northern Way Campus
555 Great Northern Way
Vancouver, BC, Canada V5T 1E2
tel: 1.604.268.7306
fax: 1.604.268.7309
email: act4hlth@sfu.ca
website: www.sfu.ca/act4hlth
How the Project Responds to Partner’s Needs:
This project is in collaboration with a breast cancer support group associated with the BCCA.
The findings are expected to assist the BCCA in tailoring their online support information and
programs for this particular study population.