For my information community research project, I am choosing to study women’s health information communities.
Women’s Health Information Communities
September 6, 2015
While considering my choices for this assignment, and the criteria Durrance and Fisher outline for defining an information community, I became interested in the difference between information communities formed and maintained by a group to serve themselves, and those formed by one group to serve another group. The examples in the lectures of hobbyists, pet owners, and Phish fans all represented groups that were forming networks to create and distribute information between themselves, whereas many types of libraries are maintained and run by groups of people who may not necessarily be in the same group as they are trying to serve. A children’s library, for example, primarily serves children, as well as their caretakers and educators, but children are not creating or contributing to the information resources being shared.
This divide between who creates, maintains, and distributes the information led me to think of the women’s health and self-help movements of the 1970s, in which one of the tactics involved in the campaigns to gain reproductive health care and autonomy was peer- and self-led education about women’s bodies and reproductive choices. This was accomplished in informal networks as well as through organizations that formed for that specific purpose, such as The Boston Women’s Health Book Collective.
I was interested in how these communities and principles have aged or transformed, and what forms they currently exist in. Some community sites and resources I have identified so far include:
- Our Bodies Ourselves (OBOS) – formerly the Boston Women’s Health Book Collective, this non-profit organization develops and promotes evidence-based information on girls’ and women’s reproductive health and sexuality. OBOS publishes a consumer oriented handbook on women’s health, which has been adapted into 30 languages. Online excerpts are available in 9 languages.
- Vagina Pagina – a volunteer operated online community that provides guides to women’s health issues, and in which users ask and answer questions. The website with wiki-guides is currently offline, but the community still operates via a livejournal community and a facebook page. There are 33,500 members registered on the livejournal.com site.
- Hesperian Health Guides – a non-profit that produces print and digital health guides to support individuals and communities in their struggles to realize the right to health. Hesperian is not solely focused on women’s health, but publishes women-specific titles, such as Where Women Have No Doctor, Health Actions for Women, and A Book for Midwives. Available in many languages.
- Gynepunk – part of the DIY open-source biology network, Hackteria, Gynepunk is working to provide instructions on how to create an tool-kit for Do It Yourself emergency gynecolological medicine, for those unwilling or unable to access traditional medicine. Recent developments include instructions for 3D-printing a speculum.
National Women’s Health Network – an advocacy group for women’s health issues. Works to spread information about various issues, as well as coordinate actions and influence policy and legistlation. Partners with other organizations.
A review of library and information science literature has shown that I should be able to find adequate scholarly articles about women’s information seeking behavior around the topics of health and healthcare, which I can use to explore how these communities function and serve their users.
Finally, I had to ask if these communities meet the five criteria identified by Durrance and Fisher:
- Does this information community exploit the information sharing qualities of technology and yield multiplier effects for stakeholders (those affected by actions of the communities)? Yes, the community resources I listed above use the internet to collect, disseminate, and share information, broadening their reach and yielding multiplier effects for stakeholders.
- Does this information community emphasize collaboration among diverse groups that provide information and may share joint responsibility and resources (including in-kind contributions)? Yes, the formal organizations partner with other resources, ask for community input, and provide spaces for individuals to share their stories. Many of the resources are available in multiple languages.
- Does this information community anticipate and often form around people’s needs to access and use information in ways that people perceive as helpful? Yes, several of the resources listed above are written for and by the users of the information in accessible language. Vagina Pagina maintains a resource section to cover frequently asked questions, thus anticipating users information needs.
- Does this information community remove barriers to information about acquiring needed services and participating in civic life? Yes, by utilizing print and online resources, these communities spread information that users may be too embarrassed to ask about in person, or to individuals who do not have access to medical care.
- Does this information community foster social connectedness within the larger community? Yes, all of the websites linked to above have sections in which they link users to other organizations and sources of information.
Fisher, K., & Durrance, J. (2003). Information communities. In K. Christensen, & D. Levinson (Eds.), Encyclopedia of community: From the village to the virtual world. (pp. 658-661). Thousand Oaks, CA: SAGE Publications, Inc. doi: http://dx.doi.org.libaccess.sjlibrary.org/10.4135/9781412952583.n248