Cancer Causes & Control

, Volume 16, Issue 10, pp 1171–1175

Patient Perspectives on Research Recruitment Through Cancer Registries

  • Laura M. Beskow
  • Robert S. Sandler
  • Robert C. Millikan
  • Morris Weinberger
Brief report


Objective: To gain preliminary insight into patients’ levels of awareness and preferences about research recruitment through cancer registries.

Methods: We developed four questions about the North Carolina Central Cancer Registry’s educational brochure and about patient preferences regarding physician involvement in research recruitment. These questions were included in the baseline interview conducted among 100 consecutively enrolled participants in the North Carolina Colorectal Cancer Care Outcomes Research Study, an ongoing observational study.

Results: Patients who read the Registry’s educational brochure generally reported that it helped them understand that a researcher could contact them, but only about one-fourth of patients recalled receiving and reading the brochure. Over two-thirds of patients said they preferred that researchers contact them directly about their interest in research participation, rather than checking with their physician first. Among patients who wanted their physician involved, most preferred a physician notification rather than a physician permission approach.

Conclusions: Registry policies about patient education and physician involvement can have an important impact on researchers’ ability to conduct population-based studies. Understanding patient perspectives is key to developing balanced policies that protect patients’ privacy, as well as facilitate their opportunities to make autonomous decisions about participating in research.

Key words

attitude epidemiology patient education physician–patient relations registries research subjects 


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  1. 1.
    Beskow LM, Sandler RS, Weinberger M (2005) Policies for research recruitment through U.S. central cancer registries: balancing privacy and scientific issues. Am J Public Health, in press.Google Scholar
  2. 2.
    National Cancer Institute Cancer Control & Population Sciences. Cancer Care Outcomes Research & Surveillance Consortium [Web Page]. Accessed Jun 14, 2005. Available at Scholar
  3. 3.
    National Cancer Institute Cancer Control & Population Sciences. North Carolina Colorectal Cancer Care Outcomes Research Study [Web Page]. Accessed Jun 14, 2005. Available at Scholar
  4. 4.
    Harris, KA 1998The informational needs of patients with cancer and their familiesCancer Pract63946CrossRefPubMedGoogle Scholar
  5. 5.
    Moody, R 2003Overcoming barriers to delivering information to cancer patientsBr J Nurs1212811287PubMedGoogle Scholar
  6. 6.
    Boring, CC, Brockman, E, Causey, N, Gregory, HR, Greenberg, RS 1984Patient attitudes toward physician consent in epidemiologic researchAm J Public Health7414061408PubMedGoogle Scholar
  7. 7.
    Dicker, BG, Kent, DL 1990Physician consent and researchers’ access to patientsEpidemiology1160163PubMedGoogle Scholar
  8. 8.
    Herrmann, N, Amsel, J, Lynch, E 1981Obtaining hospital and physician participation in a case-control study of colon cancerAm J Public Health7113141319PubMedGoogle Scholar
  9. 9.
    Savitz, DA, Hamman, RF, Grace, C, Stroo, K 1986Respondents’ attitudes regarding participation in an epidemiologic studyAm J Epidemiol123362366PubMedGoogle Scholar
  10. 10.
    Funch, DP, Marshall, JR 1981Patient attitudes following participation in a health outcome surveyAm J Public Health7113961398PubMedGoogle Scholar
  11. 11.
    Newman, B, Moorman, PG, Millikan, R 1995The Carolina Breast Cancer Study: integrating population-based epidemiology and molecular biologyBreast Cancer Res Treat355160CrossRefPubMedGoogle Scholar
  12. 12.
    Shaheen, NJ, Silverman, LM, Keku, T 2003Association between hemochromatosis (HFE) gene mutation carrier status and the risk of colon cancerJ Natl Cancer Inst95154159PubMedGoogle Scholar
  13. 13.
    Potosky, AL, Harlan, LC, Stanford, JL 1999Prostate cancer practice patterns and quality of life: the Prostate Cancer Outcomes StudyJ Natl Cancer Inst9117191724CrossRefPubMedGoogle Scholar
  14. 14.
    American Cancer Society Behavioral Research Center. Study of Cancer Survivors I & II [Web Page]. Accessed Jun 14, 2005. Available at Survivorship_Research.asp?sitearea=RES.Google Scholar

Copyright information

© Springer 2005

Authors and Affiliations

  • Laura M. Beskow
    • 1
  • Robert S. Sandler
    • 2
  • Robert C. Millikan
    • 3
  • Morris Weinberger
    • 1
    • 4
  1. 1.Department of Health Policy and Administration, School of Public HealthUniversity of North CarolinaChapel HillUSA
  2. 2.Department of Medicine and Center for Gastrointestinal Biology and DiseaseUniversity of North Carolina at Chapel HillChapel HillUSA
  3. 3.Department of Epidemiology, School of Public Health University of North Carolina at Chapel HillChapel HillUSA
  4. 4.Center for Health Services Research in Primary CareVeterans Affairs Medical CenterDurhamUSA

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