Exploring the Role of Medical and Consumer Articles in Evolving Health Practices

1. Exploring the Role of Medical and Consumer Articles in Evolving Health Practices Shelagh K. Genuis BScOT, MLIS School of Library and Information Studies University of Alberta All clipart courtesy of http://office.microsoft.com/clipart/default.aspx?lc=en-ca

2. Presentation Outline • Introduction • Illustrative medical case study • Research questions (exploratory study) • Research methods • Results and Discussion • Conclusion

3. Introduction Medical Change = Diffusion of ideas & ongoing reconciliation of new information with old ideas Process of change is influenced by multitude of factors unrelated to medicine

4. Illustrative Medical Case Study: • Changes in the use of hormone therapy (HT), as a long-term preventative therapy, for healthy menopausal and/or postmenopausal women. • The unexpected findings of the Women’s Health Initiative (WHI) study.* *Rossouw, J. E., G. L. Anderson, R. L. Prentice, A. Z. LaCroix, C. Kooperberg, M. L. Stefanick, R. D. Jackson, S. A. Beresford, B. V. Howard, K. C. Johnson, J. M. Kotchen, and J. Ockene. 2002. Risks and benefits of estrogen plus progestin in healthy postmenopausal women: Principal results from the Women's Health Initiative randomized controlled trial. JAMA 288, no. 3: 321-33.

5. Research Questions 5 research questions investigated… • How did the WHI study influence medical and consumer literature and what role did the literature play in the Innovation-Decision process related to HT as a long-term preventative therapy for healthy menopausal and postmenopausal women? • Given that published literature provides a conduit through which information flows within and between networks, what role did varying tie strength and the presence of ‘weak trusted ties’ play in the I-D process? • How has the WHI study impacted the expression of the biomedical model vs. normal life transition model within the literature? 4th & 5th related to the medicalization of life processes and the influence of industry.

6. Research Methods • Stratified random sampleof articles - Medical articles pre-WHI - Consumer articles pre-WHI - Medical articles post-WHI - Consumer articles post-WHI • Sampling frame: Articles published Jan 1999 – Oct 2003; 57 consumer articles and 84 articles from medical publications • Final sample: 49 articles (29 medical, 20 consumer)

7. Research methods … Content Analysis • Variables and values developed in accordance with research questions. • Analysis using SPSS software (Statistical Package for the Social Sciences). • Frequencies compiled, chi-square and Cramer’s V tests performed to determine statistical significance (p < .05 unless stated otherwise). • Limitations: indexing practices within sources; single coder.

8. Results and Discussion Genuis, Shelagh K. 2006. Exploring the role of medical and consumer literature in the diffusion of information related to hormone therapy for menopausal women. Journal of the American Society for Information Science and Technology 57(7): 974-988. Genuis, Shelagh K. 2004. Exploring information 'context' in the published literature of menopausal hormone therapy. Libri 54(3): 199-210. Genuis S.K. and S.J. Genuis. 2006. Exploring the continuum: Medical information to effective clinical Practice: Paper 1. The translation of knowledge into clinical practice. Journal of Evaluation in Clinical Practice 12 1): 49-62. Genuis, Shelagh K. 2005. Exploring the role of medical and consumer articles in the diffusion of information related to medical change. In CAIS/ACSI 2005 Data, Information and Knowledge in the Networked World, online conference proceedings,http://www.cais-acsi.ca/2005proceedings.htm

9. Results … • Absence of research demonstrating long-term safety and efficacy. • Significant number of pre-WHI medical articles questioned the use of long-term HT use and were categorized under the theme “HT as risk.”

10. Results … Found that the premature cessation of WHI’s estrogen plus progestin trial had significant impact on medical and consumer articles…all post-WHI articles in random sample were impacted by WHI results. WHI impacted context (biomedical vs. normal life transition). A lower than expected proportion of post-WHI articles communicated the assumption that menopause is associated with undesirable symptoms and future disease.

11. Discussion… Change in clinical practice: • Dramatic breakthroughs • Incremental alterations in practice

12. Discussion… Factors unrelated to ‘evidence’ that influenced adoption of long-term HT: • Medicalization of life processes • Interpersonal relationships • Economic influences

13. Medicalization… A look to the past…. Menopause? “The transformation, within a few years, of a formerly pleasant,energetic woman into a dull-minded but sharp-tongued caricature of her former self is one of the saddest of human spectacles . . . and the supreme tragedy is that, in the light of present medical possibilities, all this is unnecessary.”* *Wilson, Robert.A. 1966. Feminine Forever. M.Evans and Company: New York.

14. Medicalization… MedicalizationTreatment Imperative • 1980s – link between menopause and osteoporosis aggressively marketed to both clinicians and the public • 1990s - second potential indication for HT began to be actively promoted: HT as a means of reducing heart disease in women • Late 1990s - many began to view the link between aging, dementia and hormonal changes following menopause as “logical and compelling” 1 ~ “Refraining from prescribing HRT seem[ed] to necessitate specific justification” 2 ~ 1 Beckmann, C. R. 1997. Alzheimer's disease: An estrogen link? Current Opinions in Obstetrics and Gynecology 9, no. 5: 295-9.2Palmlund, I. 1997. The marketing of estrogens for menopausal and postmenopausal women. Journal of Psychosomatic Obstetrics and Gynecology 18, no. 2: 158-64.

15. Medicalization… “Many people [had] suspended ordinary standards of evidence concerning medical interventions and concluded that hormone therapy was the right thing”* *Herrington, David M., and Timothy D. Howard. 2003. From presumed benefit to potential harm - Hormone therapy and heart disease. New England Journal of Medicine 349, no. 6: 519-21.

16. Interpersonal relationships… Diffusion research: - Most individuals rely on the subjective evaluation of innovations as communicated to them by interpersonal communication channels. Application in the medical arena: - Interpersonal relationships found to be primary factors influencing the adoption of clinical innovation.1- When medical innovations are introduced through opinion leaders, the diffusion process is speeded up.2 1cf. Borbas et al. 2000; Coleman et al. 1966; Brown et al. 2002; Hunter et al. 19972cf. Farquahar et al. 1990; Lomas et al. 1991; Puska et al. 1986

17. Economic influences… Product promotion: By the late 1990s and early 2000s, postmenopausal HT was one of the most heavily promoted pharmacological interventions* *Majumdar S.R., Almasi E.A. & Stafford R.S. (2004) Promotion and prescribing of hormone therapy after report of harm by the women's health initiative. Journal of the American Medical Association292, 1983-1988.

18. Economic influences… Influence of industry and the translation of knowledgesome examples: • Industry dominates medical education at a postgraduate level 1 • Individual physicians are paid as ‘thought leaders’ 2 • Most professional societies rely on the sponsorship of pharmaceutical companies for continuing education endeavors 3 • Industry influence on practice protocols and CPGs 4 1Relman A.S. (2001) Separating continuing medical education from pharmaceutical marketing. Journal of the American Medical Association285, 2009-2012. 2 Moynihan R. (2003b) Who pays for the pizza? Redefining the relationship between doctors and drug companies. 1: Entanglement. British Medical Journal 326, 1189-1192. 3 Angell M. (2000) Is academic medicine for sale? New England Journal of Medicine 342, 1516-1518. 4 Choudhry N.K., Stelfox H.T. & Detsky A.S. (2002) Relationships between authors of clinical practice guidelines and the pharmaceutical industry. Journal of the American Medical Association 287, 612-617.

19. Discussion… Factors facilitating impact of the WHI: • Publishing venue – trust factors • Publication in consumer press • Receptive patient population

20. Publishing venue… Trust enhancing features within the published literature* - Journal impact factor- Peer-reviewed literature- Author identity- Quotations from ‘experts’ (consumer venues) - Personal voice (consumer venues) *Genuis, Shelagh K. 2005. Exploring the role of medical and consumer articles in the diffusion of information related to medical change. In CAIS/ACSI 2005 Data, Information and Knowledge in the Networked World, online conference proceedings,http://www.cais-acsi.ca/2005proceedings.htm

21. Publishing venue… Initial publication of WHI results in JAMA promoted the following: • WHI findings would be received with a certain degree of trust • Reconciliation of new and old information would assume importance for both individual physicians and medical associations • Results would be widely disseminated

22. Publication in consumer press… Simultaneous publication in consumer press • Imperative that individual physicians figured out how to translate new HT knowledge into clinical practice.

23. Publication in consumer press… Influence of consumer publications on scholarly research • Popular coverage of scholarly research increases subsequent citations of that research • In effect amplifying the transmission of medical information back to the research community1,2 1Kiernan V. (2003) Diffusion of news about research. Science Communication 25, 3- 13.2Phillips D., Kanter E., Bednarczyk B. & Tastad P. (1991) Importance of the lay press in the transmission of medical knowledge to the scientific community. New England Journal of Medicine325, 1180-1183.

24. Receptive patient population… • Qualitative studies in the late 1990s and early 2000s…. • Consistently demonstrated that many women felt apprehensive about the long-term implications of HT * • Women viewed this therapy as appropriate treatment for those experiencing undue symptoms (primarily ‘hot flashes’). *Hunter, M.S., I. O'Dea, and N. Britten. 1997. Decision-making and hormone replacement therapy: A qualitative analysis. Social Science & Medicine 45, (10): 1541-8.*Stephens, C., R. C. Budge, and J. Carryer. 2002. What is this thing called hormone replacement therapy? Discursive construction of medication in situated practice. Qualitative Health Research 12, ( 3): 347-59.*Winterich, J. A., and D. Umberson. 1999. How women experience menopause: The importance of social context. Journal of Women & Aging 11, (4): 57-73.

25. Reconciling the role of the literature • Medical literature is critically important • BUT, not solely important in evolving medical practice Evidence based medicine: "the integrationof best research evidence with clinical expertise and patientvalues”*(emphasis added) *Sackett D.L., Straus S.E., Richardson W.S., Rosenberg W. & Haynes R.B. (2000) Evidence Based Medicine: How to Practice and Teach EBM, 2nd edn. Churchill Livingstone , Edinburgh.

26. Facilitate access to knowledge coming from a diversity of research methods and perspectives • Be ever prepared for change Medical information a ‘work in progress’

27. Thank-you Questions?