Tuesday, October 21, 2003

Consuming the Consommé of Consumer Health

I recently prepared a report on business taxonomies. Taxonomies—like all classification schemas—suffer from semantic problems: one person’s Freedom Fighter is another’s Guerilla (Svenonius, 2000). It becomes obvious in the literature on business taxonomies that our classifications are filled with semantic interpretations. After reviewing some literature on consumer health issues, it seems that even information seeking behaviour is variable and subjective.

Williamson (2002), for example, studied the information needs and behaviours of women with breast cancer. The participants were largely dissatisfied with both the content of the material and the delivery method. Many suffered from information overload or felt that the provided information wasn’t appropriate to their needs. Their needs and behaviour didn’t necessarily match the way the information was provided.

In considering consumer health information, an important concept is authority. The Internet offers a lot of information but users must evaluate the quality of the provided material. PubMed’s consumer health portal—www.medlineplus.org—offers vetted consumer health information from sources such as public agencies, reputable agencies, and professional associations. The user’s interpretation of authority, however, doesn’t depend solely on the reputation of an agency. People construct their own concepts of authority based on their background and experience. McKenzie (In Press), for example, demonstrates that expecting mothers of twins engage in discursive rhetorical practices to assign authority to information sources, professional opinions, and lay knowledge.

Folk knowledge may be particularly significant for those searching for consumer health information. Pettigrew (1999), for example, introduced the concept of the “information ground” to describe the dynamic process of people coming together to share information. As evidenced by the dissatisfaction of the women with breast cancer and Pettigrew’s information ground, there may be a different way of conceptualizing information seeking difficulties rather than simply system inadequacies. Barriers to information may exist because the users need to be acculturated into a specific community of practice (Wenger, 1998) with established conceptions and vocabularies. Unfortunately, much of the consumer health information has been created for the professional medical community of practice rather than end users (see discussion of literature reading level in Baker, Wilson, & Kars, 1997).

Medical terminology has become so developed that information access problems exist even for members of the community. Doctors, for example, depend more on their university textbooks and standard handbooks than published journals (Marshall, 1993). As Ludwig Fleck noted in his discussion of scientific communities (1979), handbooks represent just the entry point to a particular literature; the “real” information lies in the esoteric journals. In the world of clinical information, the esoteric is out of reach of both the professionals and John Q. Public.

To understand some of the difficulties in searching for consumer health information, I’ve conducted my own search. While reading McKenzie’s article, I realized that I know nothing about twins. So, assuming my natural role of somebody interested in the natal development of twins, I did what so many others do: I hit PubMed.

After calling up the PubMed homepage in my browser of choice, I typed “twins” into the search field: 24,435 hits! Precision and Recall be damned, 24000 is too many hits!

I’m not sure what a “normal” searcher would do, but I used my librarian skills and turned immediately to the subject headings. I searched through MeSH for “twins” and was presented with an entire hierarchy of facets. Since I’m not a medical doctor, I had no idea what facet to use so I selected “education” and found three articles. One looked promising—“Twins: not just in science, but in society” (Segal, 2002).

Unfortunately, the full text link was down but I was able to track down the journal in Ingenta despite mismatched article titles and page numbers. The article turned out to be an opinion piece about the development of twins. The article was quite readable and provided an overview of some recent literature. In retrospect, however, I’m not sure what question the article was attempting to answer. As a “real” consumer health user, the article may have been interesting while lacking utility.

Upon refocusing my thoughts, I realized that I needed some non-academic information. While contemplating where to look (Health Canada? CDC? Beilstein? [nb. Beilstein is probably a useless database for consumer health but I like the name!]), I noticed that PubMed offered a link to “Consumer Health”. Upon following the link I found myself in NIH’s consumer health portal: MEDLINEplus. I repeated the procedure and typed “twins” into the search box. I was presented with several articles broken out into various categories: Health Topics, Drug Information, Medical Encyclopaedia, News, and Other. Under Health Topics, there was a specific topic entitled “Twins, Triplets, and Multiple Births” containing 15 articles. The titles of the most popular articles were provided to give the user greater context. One particular article related to Folic Acid and having twins caught my eye (Centres for Disease Control, 2003).

It seemed like MEDLINEplus provided better consumer health information than PubMed. Upon compiling Flesch-Kincaid scores the articles, however, I learned that both articles were practically identical with respect to readability (12.1 vs 12)!




…It seems like I’ve written myself into a corner and I’m not sure how to bring readability back to the “information grounds” and communities of practice. Maybe next week.



References

Baker, L. M., Wilson, F. L., & Kars, M. (1997). The readability of medical information on InfoTrac - Does it meet the needs of people with low literacy skills? Reference & User Services Quarterly, 37(2), 155-160.
Centres for Disease Control. (2003, January 30, 2003). Study Finds No Link Between Taking Folic Acid and Having
Twins. Retrieved October 20, 2003, from http://www.cdc.gov/od/oc/media/pressrel/r030127.htm
Fleck, L. (1979). Genesis and development of a scientific fact (F. Bradley & T. J. Trenn, Trans.). Chicago: University of Chicago Press.
Marshall, J. G. (1993). Issues in Clinical Information Delivery. Library Trends, 42(1), 83-107.
McKenzie, P. J. (In Press). Justifying Cogntive Authority Decision: Discursive Strategies of Information Seekers. Library Quarterly.
Pettigrew, K. E. (1999). Waiting for chiropody: contextual results from an ethnographic study of the information behaviour among attendees at community clinics. Information Processing & Management, 35(6), 801-817.
Segal, N. L. (2002). Twins: not just in science, but in society. Twin Research, 5(2), 139-140.
Svenonius, E. (2000). Bibliographic Objectives. In The Intellectual Foundation of Information Organization. Cambridge: MIT Press.
Wenger, E. (1998). Communities of practice : learning, meaning, and identity. Cambridge, U.K. ; New York, N.Y.: Cambridge University Press.
Williamson, K., & Manaszewicz, R. (2002). Breast cancer information needs and seeking: towards an intelligent, user sensitive portal to breast cancer online. The New Review of Information Behaviour Research, 3, 203-219.

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