Abstract
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.
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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.
National Cancer Institute Cancer Control & Population Sciences. Cancer Care Outcomes Research & Surveillance Consortium [Web Page]. Accessed Jun 14, 2005. Available at http://healthservices.cancer.gov/cancors/.
National Cancer Institute Cancer Control & Population Sciences. North Carolina Colorectal Cancer Care Outcomes Research Study [Web Page]. Accessed Jun 14, 2005. Available at http://healthservices.cancer.gov/cancors/grants/nc.html.
KA Harris (1998) ArticleTitleThe informational needs of patients with cancer and their families Cancer Pract 6 39–46 Occurrence Handle10.1046/j.1523-5394.1998.1998006039.x Occurrence Handle9460325
R Moody (2003) ArticleTitleOvercoming barriers to delivering information to cancer patients Br J Nurs 12 1281–1287 Occurrence Handle14685119
CC Boring E Brockman N Causey HR Gregory RS Greenberg (1984) ArticleTitlePatient attitudes toward physician consent in epidemiologic research Am J Public Health 74 1406–1408 Occurrence Handle6507697
BG Dicker DL Kent (1990) ArticleTitlePhysician consent and researchers’ access to patients Epidemiology 1 160–163 Occurrence Handle2073505
N Herrmann J Amsel E Lynch (1981) ArticleTitleObtaining hospital and physician participation in a case-control study of colon cancer Am J Public Health 71 1314–1319 Occurrence Handle7315994
DA Savitz RF Hamman C Grace K Stroo (1986) ArticleTitleRespondents’ attitudes regarding participation in an epidemiologic study Am J Epidemiol 123 362–366 Occurrence Handle3511679
DP Funch JR Marshall (1981) ArticleTitlePatient attitudes following participation in a health outcome survey Am J Public Health 71 1396–1398 Occurrence Handle7316006
B Newman PG Moorman R Millikan (1995) ArticleTitleThe Carolina Breast Cancer Study: integrating population-based epidemiology and molecular biology Breast Cancer Res Treat 35 51–60 Occurrence Handle10.1007/BF00694745 Occurrence Handle7612904
NJ Shaheen LM Silverman T Keku (2003) ArticleTitleAssociation between hemochromatosis (HFE) gene mutation carrier status and the risk of colon cancer J Natl Cancer Inst 95 154–159 Occurrence Handle12529348
AL Potosky LC Harlan JL Stanford (1999) ArticleTitleProstate cancer practice patterns and quality of life: the Prostate Cancer Outcomes Study J Natl Cancer Inst 91 1719–1724 Occurrence Handle10.1093/jnci/91.20.1719 Occurrence Handle10528021
American Cancer Society Behavioral Research Center. Study of Cancer Survivors I & II [Web Page]. Accessed Jun 14, 2005. Available at http://www.cancer.org/docroot/RES/content/RES_9_1_BRC_ Survivorship_Research.asp?sitearea=RES.
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Beskow, L.M., Sandler, R.S., Millikan, R.C. et al. Patient Perspectives on Research Recruitment Through Cancer Registries. Cancer Causes Control 16, 1171–1175 (2005). https://doi.org/10.1007/s10552-005-0407-2
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DOI: https://doi.org/10.1007/s10552-005-0407-2