Communications behaviour on consumer-health electronic lists

Internet Research

ISSN: 1066-2243

Article publication date: 1 October 1998



Domas White, M. (1998), "Communications behaviour on consumer-health electronic lists", Internet Research, Vol. 8 No. 4.



Emerald Group Publishing Limited

Copyright © 1998, MCB UP Limited

Communications behaviour on consumer-health electronic lists

Communications behaviour on consumer-health electronic lists

Principal researcher: Marilyn Domas WhiteCollege of Library and Information Services,University of Maryland, College Park, MD 20742E-mail:

Part of a growing body of empirical research on consumer-health informatics, this project looks at the communications behaviour of participants on consumer-oriented, health-related electronic discussion groups, specifically electronic lists focusing on a particular disease or medical problem. The research has several objectives: to characterise the nature of all communication on each list; to analyse the nature and content of the medical questions participants ask; to determine the criteria that the participants apply to the medical information received via the lists; and, finally, to put the information-seeking via electronic lists within the overall context of the participants' information behaviour related to the disease or medical condition.

Comparatively little is known about the communications behaviour of participants on consumer-oriented, health-related electronic discussion groups. A recent review of the literature (Strain, 1996) related to consumer use of the Internet for health-related information revealed some articles and comments related to Internet use (for example, Lamberg, 1996; Meyer, 1995), but no empirical research. Since then several studies have analysed the messages on specific lists (Preece, 1998; Culver et al., 1997; Klemm et al., 1998; Sharf, 1997) or queried participants about their behaviour (Fernsler and Manchester, 1997). With the exception of Preece, the other studies have focused on one list.

This project focuses on two lists related to colon cancer and diabetes and does some cross-list comparisons to determine if type-of-disease is a factor influencing the communications behaviour. The lists were selected because they represented diseases with different mortality rates and with radically different forms of treatment. Diseases which tended to affect only men or only women were excluded, as were those which so affected a patient that his or her use of electronic discussion groups would be unlikely, such as Alzheimer's disease. In addition, the listservs were comparable in that they were not moderated, had an active but not overwhelming flow of messages daily and a reasonably large list of subscribers, and had been in existence for a while. They also had comparable traffic.

The research is being done in two phases, each characterised by a different methodological approach. The first phase is almost finished. It focuses on the first two objectives: characterising the communications and analysing the medical questions in depth. This phase began with an analysis of a random sample of 1,000 messages from each list appearing over a two to three month period. The data analysis method being used for both studies in this phase is content analysis, drawing in most cases on existing typologies. All of the messages were analysed using Bales' transactional methods categories (Bales, 1951). Bales' analytical categories were originally devised for use in studying oral interactions within group settings, and the speech units were considerably smaller than the messages on the two lists. The 12 functions that Bales identified, however, are particularly useful for studying messages on electronic lists since they allow for identifying affective and emotive as well as informational message functions. In this study, over half the messages on each list had socio-emotional content. The support function of health-related electronic lists is a common finding. Preece (1998, p. 33) refers to them as "empathic communities". The categories can be grouped to indicate negative/positive orientation and problem orientation. In the first study, the message was the unit of analysis, and each message was coded only once for each category it contained; no effort was made to measure the intensity or frequency of occurrence of that category within the message. The messages served, on average, about three functions. A participant's message could, for example, orient the list to his situation (give orientation), ask for suggestions about treatment (ask for possible ways of action), and close by empathising with others on the list (show solidarity).

Besides the comparison between the two lists, an analysis was also done to determine if the nature of the message changed based on the role of the participant ­ patient, friend, relative, or caregiver ­ and medical professional. A paper reporting on the nature of the communications has already been presented at the American Society for Information Science (ASIS) 1997 conference (Schoch and White, 1997).

For the second content analysis, the unit of analysis is the question appearing within a message. The 2,000 messages yielded a total of 756 questions. Of these, 413 (55 percent) related to medical issues. Several aspects of these questions are being considered ­ form of the question; the subject orientation or content; the linguistic features used to establish a context, if any; and references in the context to medical professionals. Form is coded with Graesser's typology of questions (Graesser 1994) and content with a modified version of Roter's categories (1984). The other codes were established through content analysis using the constant comparison method recommended by Strauss and Corbin (1990). Besides the cross-list comparison, the content data are also being compared, through reference to existing studies, to the content of questions asked in physician/ client interactions in an office setting to determine if the content of questions varies depending on the setting and the likely respondent. Relatively few medical professionals participated on each list, so most interactions occurred between peers. A paper reporting on preliminary results may be presented at the international federation for information and documentation (FID) conference in New Delhi, India, in October 1998.

The second phase of the project is based on more obtrusive data-gathering methods and will begin shortly. Telephone interviews, based on a critical incident technique, will be conducted with a sample of participants from each list who have asked a medical question recently. Each participant will be provided with a copy of the question and the answers appearing within a week and questioned about his satisfaction with responses, the criteria he uses for evaluating the responses to determine their relevance or usefulness, his actual or likely use of the information, and his general pattern of gathering information about his medical condition.

The question/answer packets will also be given to a few medical professionals to elicit their relevance judgments about the information. Of particular interest in this study is identifying the evaluative criteria that participants apply to information received via the list. Most studies identifying relevance criteria have been based on student or researcher judgments about information appearing in the formal media, such as scholarly articles or bibliographic surrogates of the articles. Two exceptions (Schamber, 1991; Weldon, in process) focus on criteria applied by non-scientists' in using scientific information or information related to a scientific crisis. Neither looks at information provided via electronic lists. The interview data will also provide a basis for putting information exchange via electronic lists in the context of the participant's general information behaviour related to his disease or medical condition. The open-ended questions in the interview data will be analysed using the same constant comparison method noted earlier (Strauss and Corbin, 1990).


Bales, R.F. (1951), Interaction Process Analysis: A Method for the Study of Small Groups, Addison-Wesley Press, Cambridge, MA.

Culver, J.D., Gerr, F. and Frumkin, H. (1997), "Medical information on the Internet: a study of an electronic bulletin board", Journal of General Internal Medicine, Vol. 12 No. 8, pp. 466-70.

Fernsler, J.I. and Manchester, L.J. (1997), "Evaluation of a computer-based cancer support network", Cancer Practice, Vol. 5 No. 1, pp. 46-51.

Graesser, A.C. (1994), "Question asking and answering", in Gernsbacher, M.A. (Ed.), Handbook of Psycholinguistics, Academic Press, San Diego, CA, pp. 517-38.

Klemm, P., Reppert, K. and Visich, L. (1998), "A non-traditional cancer support group", Computers in Nursing, Vol. 16 No. 1, pp. 31-6.

Lamberg, L. (1996), "Patients go on-line for support", American Medical News, Vol. 39, p. 16.

Meyer, H. (1995), "Patients heard it through the on-line", American Medical News, Vol. 38, p. 36.

Preece, J. (1998), "Empathic communities: reaching out across the Web", Interactions, Vol. 2, pp. 32-43.

Roter, D.L. (1984), "Patient question asking in physician-patient interaction", Health Psychology, Vol. 3 No. 5, pp. 395-409.

Schamber, L. (1991), "Users' criteria for evaluation in multimedia information seeking and use situations", PhD dissertation, Syracuse University.

Schoch, N.A. and White, M.D. (1997), "A study of the communication patterns of participants in consumer health electronic discussion groups", Proceedings of the 60th Annual Meeting of the American Society for Information Science, Vol. 34, pp. 280-92.

Sharf, B.F. (1997), "Communicating breast cancer on-line: Support and empowerment on the Internet", Women and Health, Vol. 26 No. 1, pp. 65-84.

Strain, P.M. (1996), "The Internet as a tool for communicating medical and other health-related information to patients: A literature review", unpublished.

Strauss, A.L. and Corbin, J. (1990), Basics of Qualitative Research: Grounded Theory Procedures and Techniques, Sage, Newbury Park, CA.

Weldon, J. (in process), "Sense-making by non-scientists about a scientific crisis", PhD dissertation, University of Maryland, College Park, MD.

Related articles