Sarah M. Greene, MPH1, Peter A. Ubel, MD
2, Jennifer B. McClure, PhD
1, Karen E. Johnson, PhD
1, Brian J. Zikmund-Fisher, PhD
3, Holly A. Derry, MPH
2, Azadeh Stark, PhD
4, Sarah L. Claud, MPH
4, and Angela Fagerlin, PhD
2. (1) Group Health Cooperative, Seattle, WA, (2) University of Michigan, Ann Arbor, MI, (3) VA Ann Arbor Healthcare System & University of Michigan, Ann Arbor, MI MI, USA USA, (4) Henry Ford Health System, Detroit, MI
Purpose: This report illuminates real-world challenges and opportunities encountered while implementing a project testing an Internet-based risk communication decision aid in two healthcare systems. Approaches to communicating tailored risk information over the Internet have not been fully optimized, though this modality has the potential to reach large populations in a replicable and sustainable way. Moreover, Web-based communication is an increasingly important adjunct in patient care. Methods: This project is designing a tailored decision aid to communicate with women about breast cancer risk, and inform them about tamoxifen as an option for prophylaxis. Collaborators include two healthcare systems (group model HMOs), and an academic coordinating site. Study participants will be recruited from enrolled populations of the HMOs. The academic site led development of the decision aid, which includes personalized breast cancer risk information, different methods for presenting risk information, and detailed description of the risks and benefits of tamoxifen. The health plan leaders and institutional review board of the two HMOs were presented with all materials. Results: One HMO expressed numerous concerns about the decision aid content, including the fact that women would be receiving medical information from a source other than their physician. Another concern was that demand for tamoxifen (cost of medication and increase in physician visits) would spiral as a result of this project. Following protracted negotiations and modifications to the original design, the study was approved by the IRB and leadership of the concerned HMO. The strong reaction to this risk communication tool was not anticipated at the inception of the study. The research team was therefore obliged to reconsider many elements of the decision aid and accompanying data collection tools. Concerns stemmed primarily from perceived appropriateness of the decision aid content, which focused on tamoxifen as an option for breast cancer prevention. Conclusions: Translational research on clinical decision aids—particularly risk communication tools—is imperative to help both patients and doctors reach the best possible conclusion in situations of medical uncertainty. However, practitioners in delivery systems and researchers may have legitimate but divergent viewpoints about approach, salience and impact of certain topics. Involving practicing clinicians and patients in the development of risk communication strategies and tools may be warranted.
See more of Poster Session II
See more of The 27th Annual Meeting of the Society for Medical Decision Making (October 21-24, 2005)