Examining Cross-Source Engagement With Cancer-Related Information and Its Impact on Doctor–Patient Relations

Abstract

Patients may bring unreliable information to the physician, complicating the physician–patient relationship, or outside information seeking may complement physician information provision, reinforcing patients' responsibility for their health. The current descriptive evidence base is weak and focuses primarily on the Internet's effects on physician–patient relations. This study describes how cancer patients bring information to their physicians from a range of sources and are referred by physicians to these sources; the study also examines explanations for these behaviors. Patients with breast, prostate, and colon cancer diagnosed in 2005 (N = 1,594) were randomly drawn from the Pennsylvania Cancer Registry; participants returned mail surveys in Fall 2006 (response rate = 64%). There is evidence that both bringing information to physicians and being referred to other sources reflects patients' engagement with health information, preference for control in medical decision making, and seeking and scanning for cancer-related information. There is also evidence that patients who bring information from a source are referred back to that source.

ACKNOWLEDGMENTS

The authors are grateful to Katrina Armstrong, Angela DeMichele, Sandy Shwartz, Angel Ho, Bridget Kelly, Chul-joo Lee, Lourdes Martinez, Rebekah Nagler, Susana Ramirez, Anca Romantan, Jeff Niederdeppe, Aaron Smith-McLallen, and Norman Wong for their insightful comments on earlier drafts of the article and/or for contributions to instrument development, data collection, and coding; and to Robin Otto, Craig Edelman, and personnel at the Pennsylvania Cancer Registry for collaboration on sample development. The Pennsylvania Department of Health specifically disclaims responsibility for any analyses, interpretations, or conclusions. The authors wish to acknowledge the funding support of the National Cancer Institute's Center of Excellence in Cancer Communication (CECCR) located at the Annenberg School for Communication, University of Pennsylvania (grant P50-CA095856-05).

Notes

¹AAPOR response rate # 4 refers to the method by which the response rate was calculated for the survey. The American Association for Public Opinion Research has created a standardized definition of a response rate, which distinguishes between the response rate and the cooperation rate, covers household, telephone, mail, and Internet modes of administration, discusses the criteria for ineligibility, and specifies methods for calculating refusal and noncontact rates. As a result, response and nonresponse rates can now be successfully compared across surveys of different topics and organizations. In addition, these definitions and their widespread acceptance have resulted in a greater willingness of researchers to report low response rates. Researchers should always include in their survey reports the response rate, computed according to the appropriate AAPOR formula, in this case it is response rate no. 4.