ASIS&T SIG USE Annual Research Symposium

Connecting Research and Practice: Special Populations

Proposed Topic: Women’s Health and Information Needs

Kalyani Ankem

Associate Professor

School of Library and Information Sciences

North Carolina Central University

Durham, NC 27707

Not much has been researched and written on the very important topic of information concerning women’s health. I recently conducted a study (completed data analysis) to understand the information needs of women who have had an innovative procedure called uterine fibroid embolization performed to treat symptomatic uterine fibroids (Ankem, 2005a; Ankem, 2005b). The new procedure is an alternative to the traditionally performed hysterectomy for treating the problem in women, a condition which is more common among African American women. As uterine fibroid embolization is a minimally invasive alternative which allows select women to avoid extensive surgery, the new procedure has been an innovation phenomenon in women’s health circles (Helliker & Etter, 2004, August 24).

Prior to conducting the above study, I researched the diffusion of information related to uterine fibroid embolization in Michigan among radiologists, physicians who perform the new procedure (Ankem, 2003). Interestingly, I found that radiologists who were in hospitals that were not affiliated with universities were more influential and active in diffusing the innovation in Michigan than were the radiologists who worked in hospitals affiliated with major universities in Michigan. However, all radiologists provided clues to other influences on the spread of the procedure, which became an impetus for my latter study. The radiologists indicated that gynecologists, who perform hysterectomy and other alternative procedures and who are initial contacts for patients, were not informing patients about the new procedure, and were not referring suitable candidates to radiologists. This situation is aggravated because radiologists seldom have patients approaching them directly. The radiologists felt that since the gynecologists performed the alternative procedures, a business motive was in operation in hesitating to direct suitable candidates to the new procedure.

In my latter study, I have found that patients did have difficulty in getting information from gynecologists, and many patients with higher levels of education were quite assertive in finding information for themselves – first, by becoming aware through a friend at work, a popular magazine (Essence in my study as most of my participants were African American women), or a television show, such as Primetime Live or 20/20, and next, by probing for more information on the Internet. Almost all of the women I spoke with were afraid to go through hysterectomy, even if they were beyond child-bearing years – a stage which would be a major consideration for younger women in preferring the uterine sparing embolization procedure. Upon awareness and finding information on the Internet, many women discussed the procedure with their gynecologists who at that point, in many instances, agreed that there was such a new procedure and that many women were choosing to go through with it. Also, the women indicated that primary care physicians, such as family practitioners and internists, whom many consulted before going to the gynecologists, did not provide any information. According to the women, primary care physicians simply directed them to the gynecologists.

The information concerning the new embolization procedure was critical to women in avoiding extensive surgery. Without the information sources that provided the information, many would have ended up having a hysterectomy like others whom I have not studied. I would be interested in knowing about the work of other researchers who are pursuing related topics in women’s health – theories they have applied, approaches they have undertaken to study, and measurements they have employed. Most of all, I would be interested in discussing what can be done with results like the above to help women in finding information about their health.

References

Ankem, K. (2005a). Information needs of women with symptomatic uterine fibroids.

Manuscript in preparation.

Ankem, K. (2005b). Information sources used by women in their path to uterine fibroid

embolization: An index of helpfulness. Manuscript in preparation.

Ankem, K. (2003). Influence of information sources on the adoption of uterine fibroid

embolization by interventional radiologists. Journal of the Medical Library Association, 91(4), 450-459.

Helliker, K, & Etter L. (2004, August 24). Silent treatment: Hysterectomy alternative goes

unmentioned to many women; gynecologists often don’t cite less-invasive procedure

to treat fibroid tumors; bailiwick of other specialists, The Wall Street Journal, p. A1.