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Why Do People Participate in Epidemiological Research?

Abstract

Many assumptions are made about public willingness to participate in epidemiological research, yet few empirical studies have been conducted to ascertain whether such assumptions are correct. Our qualitative study of the public and of expert stakeholders leads us to suggest that people are generally prepared to participate in epidemiological research, particularly if it is conducted by a trusted public institution such as a government health department, charity, or university. However, there is widespread community distrust of research conducted or sponsored by pharmaceutical companies. Individuals are prompted to take part if the study concerns an illness they or a family member or friend have personally experienced or if they believe the research will confer a widespread public benefit. Preferences vary about the mode of contact for the research to be conducted. Willingness to participate in telephone surveys has decreased in recent years, and this may be a consequence of an increase in calls to homes by telemarketers and market researchers. Participants also stressed the importance of knowing where their names and contact details were sourced and suggested that this information be available to prospective study participants as a matter of course in the first approach or letter. We provide valuable information to epidemiologists in designing studies.

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References

  1. Abma, T.A. 2005. Patient participation in health research: Research with and for people with spinal cord injuries. Qualitative Health Research 15(10): 1310–1328. doi:10.1177/1049732305282382.

  2. Breitkopf, C.R., M. Loza, K. Vincent, T. Moench, L.R. Stanberry, and S.L. Rosenthal. 2011. Perceptions of reimbursement for clinical trial participation. Journal of Empirical Research on Human Research Ethics 6(3): 31–38. doi:10.1525/jer.2011.6.3.31.

  3. Buchwald, D., V. Mendoza-Jenkins, C. Croy, H. McGough, M. Bezdek, and P. Spicer. 2006. Attitudes of urban American Indians and Alaska natives regarding participation in research. Journal of General Internal Medicine 21(6): 648–651. doi:10.1111/j.1525-1497.2006.00449.x.

  4. Cook, K., and K. Nunkoosing. 2008. Maintaining dignity and managing stigma in the interview encounter: The challenge of paid-for participation. Qualitative Health Research 18(3): 418–427. doi:10.1177/1049732307311343.

  5. Cook, T.E., and P. Gronke. 2005. The skeptical American: Revisiting the meanings of trust in government and confidence in institutions. The Journal of Politics 67(3): 784–803.

  6. Dunn, K.M., K. Jordan, R.J. Lacey, M. Shapley, and C. Jinks. 2004. Patterns of consent in epidemiologic research: Evidence from over 25,000 responders. American Journal of Epidemiology 159(11): 1087–1094. doi:10.1093/aje/kwh141.

  7. Eagan, T.M.L., G.E. Eide, A. Gulsvik, and P.S. Bakke. 2002. Nonresponse in a community cohort study: Predictors and consequences for exposure-disease associations. Journal of Clinical Epidemiology 55(8): 775–781. doi:10.1016/S0895-4356(02)00431-6.

  8. Freimuth, V.S., S. Crouse Quinn, S.B. Thomas, G. Cole, E. Zook, and T. Duncan. 2001. African Americans’ views on research and the Tuskegee Syphilis Study. Social Science and Medicine 52(5): 797–808.

  9. Galea, S., and M. Tracey. 2007. Participation rates in epidemiologic studies. Annals of Epidemiology 17(9): 643–653.

  10. Green, J., K. Willis, E. Hughes, et al. 2007. Generating best evidence from qualitative research: The role of data analysis. Australian and New Zealand Journal of Public Health 31(6): 545–550. doi:10.1111/j.1753-6405.2007.00141.x.

  11. Holmes, W., P. Stewart, A. Garrow, I. Anderson, and L. Thorpe. 2002. Researching Aboriginal health: Experience from a study of urban young people’s health and well-being. Social Science and Medicine 54(8): 1267–1279. doi:10.1016/s0277-9536(01)00095-8.

  12. Hull, S.C., K. Glanz, A. Steffen, and B.S. Wilfond. 2004. Recruitment approaches for family studies: Attitudes of index patients and their relatives. IRB: A Review of Human Subjects Research 26(4): 12–17.

  13. Hunter, J., K. Corcoran, S. Leeder, and K. Phelps. 2012. Appealing to altruism is not enough: Motivators for participating in health services research. Journal of Empirical Research on Human Research Ethics 7(3): 84−90. doi:10.1525/jer.2012.7.3.84.

  14. Johnston, L. 2006. Software and method: Reflections on teaching and using QSR NVivo in doctoral research. International Journal of Social Research Methodology 9(5): 379–391. doi:10.1080/13645570600659433.

  15. Kirkland, S.A., P.S. Raina, C. Wolfson, et al. 2009. Exploring the acceptability and feasibility of conducting a large longitudinal population-based study in Canada. Canadian Journal on Aging 28(3): 231–242. doi:10.1017/S0714980809990043.

  16. Lincoln, Y.S., and E.G. Guba. 1985. Naturalistic inquiry. Newbury Park, CA: Sage Publications.

  17. McSweeney, J.C., C. Pettey, W.P. Fischer, and A. Spellman. 2009. Going the distance: Overcoming challenges in recruitment and retention of black and white women in a multisite, longitudinal study of predictors of coronary heart disease. Research in Gerontological Nursing 2(4): 256–264. doi:10.3928/19404921-20090803-01.

  18. Morris, N., and M. Schneider. 2010. Volunteer research subjects’ experience of participation in research on a novel diagnostic technology for breast cancer. Qualitative Health Research 20(1): 81–92. doi:10.1177/1049732309355592.

  19. Morton, L.M., J. Cahill, and P. Hartge. 2006. Reporting participation in epidemiologic studies: A survey of practice. American Journal of Epidemiology 163(3): 197–203. doi:10.1093/aje/kwj036.

  20. O’Neill, O. 2002. A question of trust: Spreading suspicion. Lecture presented at Reith Lectures 2002. BBC Radio 4. http://www.bbc.co.uk/radio4/reith2002/lectures.shtml. Accessed July 6, 2014.

  21. Peel, E., O. Parry, M. Douglas, and J. Lawton. 2006. “It’s no skin off my nose”: Why people take part in qualitative research. Qualitative Health Research 16(10): 1335–1349. doi:10.1177/1049732306294511.

  22. Plummer, P., S. Jackson, J. Konarski, et al. 2002. Making epidemiologic studies responsive to the needs of participants and communities: The Carolina Breast Cancer Study experience. Environmental and Molecular Mutagenesis 39(2–3): 96–101.

  23. Robling, M.R., K. Hood, H. Houston, R. Pill, J. Fay, and H.M. Evans. 2004. Public attitudes towards the use of primary care patient record data in medical research without consent: A qualitative study. Journal of Medical Ethics 30(1): 104–109. doi:10.1136/jme.2003.005157.

  24. Schaefer, G.O., E.J. Emanuel, and A. Wertheimer. 2009. The obligation to participate in biomedical research. The Journal of the American Medical Association 302(1): 67–72.

  25. Strauss, A.L., and J. Corbin. 1998. Basics of qualitative research: Techniques and procedures for developing grounded theory, 2nd ed. Thousand Oaks, CA: Sage Publications.

  26. Teschke, K., S. Marino, R. Chu, J.K. Tsui, M.A. Harris, and S.A. Marion. 2010. Public opinions about participating in health research. Canadian Journal on Public Health 101(2): 159–164.

  27. University of Pittsburgh. 2011. Research participant registry: Improving health through research. http://www.researchregistry.pitt.edu/Index.shtml. Accessed July 6, 2014.

  28. Vinther-Larsen, M., M. Riegels, M.H. Rod, M. Schiøtz, T. Curtis, and M. Grønbæk. 2010. The Danish Youth Cohort: Characteristics of participants and non-participants and determinants of attrition. Scandinavian Journal of Public Health 38(6): 648–656. doi:10.1177/1403494810374222.

  29. Washington University School of Medicine. 2008. Research participant registry. https://vfh.wustl.edu/. Accessed July 6, 2014.

  30. Willis, K.F., A. Robinson, R. Wood-Baker, P. Turner, and E.H. Walters. 2011. Participating in research: Exploring participation and engagement in a study of self-management for people with chronic obstructive pulmonary disease. Qualitative Health Research 21(9): 1273–1282. doi:10.1177/1049732311405216.

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Acknowledgements

We acknowledge receipt of funding from Australia’s National Health and Medical Research Council to conduct the research study from which this paper is drawn.

Source of Support

The article is part of a research project “Privacy and Participation in Epidemiological Research” funded by The National Health and Medical Research Council (NHMRC), Australia, grant #545957.

Declaration of Conflicting Interests

The authors declare no conflict of interest with respect to the authorship and/or publication of this article.

Author information

Correspondence to Claudia Slegers.

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Slegers, C., Zion, D., Glass, D. et al. Why Do People Participate in Epidemiological Research?. Bioethical Inquiry 12, 227–237 (2015). https://doi.org/10.1007/s11673-015-9611-2

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Keywords

  • Research subjects/psychology
  • Public opinion
  • Patient participation
  • Epidemiologic research design
  • Motivation
  • Informed consent