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Public Opinions about Participating in Health Research

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Canadian Journal of Public Health Aims and scope Submit manuscript

Abstract

Objectives

Privacy legislation has limited options for recruiting subjects to health studies. Policy changes are motivated by assumptions about public attitudes towards participation, yet surveys of attitudes have rarely been done. We investigated public willingness to participate in health research and how willingness was affected by various factors.

Methods

A survey of adults randomly selected from the telephone directory was conducted in British Columbia, Canada. Mailed self-administered questionnaires asked about willingness to participate in health research and the influence on willingness of the method of subject selection, the organization making the contact, and other factors.

Results

There were 1,477 respondents (58% of eligible); 85% were willing to participate in health research at least sometimes. The organization making the contact influenced comfort about participation: 10% of respondents felt uncomfortable if contacted by a university, 12% if by a hospital, 26% if by government, and 55% if by private research firms. Factors most positively influencing choice to participate were future health benefits to society (87%) and oneself (87%), and receiving a copy of the study results (81%).

Conclusions

Participation in health research appears to be viewed favourably by members of the public, and participation may be highest when university or hospital-based researchers are able to contact subjects directly using information from government databases.

Résumé

Objectif

Les lois sur la protection des renseignements personnels limitent les options lorsqu’on veut recruter des sujets pour des études sur la santé. Ce mouvement de fond repose sur certaines hypothèses quant aux attitudes du public à l’égard de la participation. Pourtant, les sondages sur les attitudes sont rares. Nous avons donc examiné la volonté du public de collaborer à la recherche en santé et l’influence de divers facteurs sur cette volonté de collaboration.

Méthode

Nous avons mené un sondage en Colombie-Britannique, au Canada, auprès d’adultes sélectionnés au hasard dans le bottin téléphonique. Nous leur avons posté des questionnaires à remplir soi-même. Les questions portaient sur la volonté de collaborer à la recherche en santé et l’influence de divers facteurs (dont la méthode de sélection des sujets et l’organisme établissant le contact) sur leur volonté de collaboration.

Résultats

Sur les 1 477 répondants (58 % des sujets admissibles), 85 % étaient disposés à participer à la recherche en santé au moins de temps à autre. L’organisme établissant le contact influençait le degré d’aisance à l’idée de participer: 10 % des répondants se sentaient mal à l’aise s’ils étaient contactés par une université, 12 % s’ils l’étaient par un hôpital, 26 % s’ils l’étaient par le gouvernement, et 55 % s’ils l’étaient par une firme de sondage privée. Les facteurs les plus propices à la collaboration étaient l’intérêt futur de l’étude en question pour la santé collective (87 %) et pour la santé personnelle (87 %) et le fait de recevoir un exemplaire des résultats de l’étude (81 %).

Conclusion

La participation à la recherche en santé semble être vue sous un jour favorable par les personnes du public, et cette participation est sans doute la plus élevée lorsque des chercheurs rattachés à une université ou à un hôpital peuvent directement contacter les sujets en trouvant leurs coordonnées dans des bases de données gouvernementales.

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References

  1. Canadian Institutes of Health Research, Natural Sciences and Engineering Council of Canada, Social Sciences and Humanities Research Council of Canada. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa: The Councils, 1998 (with 2000, 2002, 2005 amendments).

    Google Scholar 

  2. European Union. Directive 95/46/EC of the European parliament and of the council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and the free movement of such data. 1995.

    Google Scholar 

  3. Data Protection Act 1998. London: Stationery Office, 1998.

  4. Plater S, Seeley E, Dixon LA. Two routes to privacy protection: A comparison of health information legislation in Canada and the United States. J Womens Health 1998;7:665–72.

    Article  CAS  Google Scholar 

  5. Appelbaum PS. Protecting privacy while facilitating research. Am J Psychiatry 2000;157:1725–26.

    Article  CAS  Google Scholar 

  6. Verity C, Nicoll A. Consent, confidentiality and the threat to public health surveillance. BMJ 2002;324:1210–13.

    Article  Google Scholar 

  7. Coleman MP, Evans BG, Barrett G. Confidentiality and the public interest in medical research–will we ever get it right? Clin Med 2003;3(3):219–28.

    Article  Google Scholar 

  8. Peto J, Fletcher O, Gilham C. Data protection, informed consent and research. BMJ 2004;328:1029–30.

    Article  Google Scholar 

  9. Beskow LM, Botkin JR, Daly M, Juengst ET, Lehmann LS, Merz JF, et al. Ethical issues in identifying and recruiting participants for familial genetic research. Am J Med Genet 2004;130(4):424–31.

    Article  Google Scholar 

  10. Iversen A, Liddell K, Fear N, Hotopf M, Wessely S. Consent, confidentiality, and the Data Protection Act. BMJ 2006;332:165–69.

    Article  Google Scholar 

  11. Hewison J, Haines A. Overcoming barriers to recruitment in health research. BMJ 2006;333:300–2.

    Article  Google Scholar 

  12. Baker R, Sheils C, Stevenson K, Fraser R, Stone M. What proportion of patients refuse consent to data collection from their records for research purposes? Br J Gen Pract 2000;50:655–56.

    CAS  PubMed  PubMed Central  Google Scholar 

  13. Woolf SH, Rothemich SF, Johnson RE, Marsland DW. Selection bias from requiring patients to give consent to examine data for health services research. Arch Fam Med 2000;9:111–18.

    Article  Google Scholar 

  14. Asai A, Ohnishi M, Nishigaki E, Sekimoto M, Fukuhara S, Fukui T. Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: Preliminary findings based on focus group interviews. BMC Med Ethics 2002;3:E1.

    Article  Google Scholar 

  15. Nelson K, Garcia RE, Brown J, Mangione CM, Louis TA, Keeler E, Cretin S. Do patient consent procedures affect participation rates in health services research? Med Care 2002;40:283–88.

    Article  Google Scholar 

  16. Willison DJ, Keshavjee K, Nair K, Goldsmith C, Holbrook AM. Patient consent preferences for research uses of information in electronic medical records: Interview and survey data. BMJ 2003;326:373–77.

    Article  Google Scholar 

  17. Robling MR, Hood K, Houston H, Pill R, Fay J, Evans HM. Public attitudes towards the use of primary care patient record data in medical research without consent: A qualitative study. J Med Ethics 2004;30:104–9.

    Article  CAS  Google Scholar 

  18. Zurita L, Nohr C. Patient opinion–EHR assessment from the users perspective. Medinfo 2004;11(Pt 2):1333–36.

    Google Scholar 

  19. Beto JA, Geraci MC, Marshall PA, Bansal VK. Pharmacy computer prescription databases: Methodologic issues of access and confidentiality. Ann Phar-macother 1992;26:686–91.

    Article  CAS  Google Scholar 

  20. Campbell Research and Consulting. The Impact of Privacy Legislation on NHMRC Stakeholders–Comparative Stakeholder Analysis. Report to National Health and Medical Research Council, Department of Health and Ageing, Canberra, 2004. Available at: https://doi.org/www.nhmrc.gov.au/about/_files/st8.pdf (Accessed March 23, 2009).

    Google Scholar 

  21. Barrett G, Cassell JA, Peacock JL, Coleman M P. National survey of British public’s views on use of identifiable medical data by the National Cancer Registry. BMJ 2006;332:1068–72.

    Article  Google Scholar 

  22. Kho ME, Duffett M, Willison DJ, Cook DJ, Brouwers MC. Written informed consent and selection bias in observational studies using medical records: Systematic review. BMJ 2009;338:b866.

    Article  Google Scholar 

  23. Harris MA, Levy AR, Teschke K. Personal privacy and public health: Potential impacts of privacy legislation on health research in Canada. Can J Public Health 2008;99:293–96.

    PubMed  Google Scholar 

  24. Little J, Berrens R. Explaining disparities between actual and hypothetical stated values: Further investigation using meta-analysis. Economics Bulletin 2004;3:1–13.

    Google Scholar 

  25. Willison D. Privacy and the secondary use of data for health research: Experience in Canada and suggested directions forward. J Health Serv Res Policy 2003;8(Suppl 1):17–23.

    Article  Google Scholar 

  26. Willison DJ, Emerson C, Szala-Meneok KV, Gibson E, Schwartz L, Weisbaum KM, et al. Access to medical records for research purposes: Varying perceptions across research ethics boards. J Med Ethics 2008;34:308–14.

    Article  CAS  Google Scholar 

  27. De Wet HCW, Dekker JM, Van Veen EB, Olsen J. Access to data from European registries for epidemiological research: Results from a survey by the International Epidemiological Association European Federation. Int J Epidemiol 2003;32:1114–15.

    Article  Google Scholar 

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Author information

Authors and Affiliations

  1. School of Population and Public Health, University of British Columbia, BC V6T 1Z3, Vancouver, BC, Canada

    Kay Teschke PhD, Suhail Marino BA, M. Anne Harris MSc & Stephen A. Marion MD, MS, MHSc

  2. Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada

    Rong Chu MSc

  3. Department of Neurology, University of British Columbia, Vancouver, BC, Canada

    Joseph K. C. Tsui MD

Authors
  1. Kay Teschke PhD
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  2. Suhail Marino BA
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  3. Rong Chu MSc
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  4. Joseph K. C. Tsui MD
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  5. M. Anne Harris MSc
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  6. Stephen A. Marion MD, MS, MHSc
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Corresponding author

Correspondence to Kay Teschke PhD.

Additional information

Acknowledgements: We appreciate the kind participation of all the study respondents. Hasina Jamal and Saleema Dhalla were the research assistants who conducted the mailings and telephone follow-up. Malcolm Maclure, British Columbia Ministry of Health, had the initial idea to question the subjects of our Parkinson’s disease study about their willingness to participate in health research and the method of identification. This study was funded by the British Columbia Medical Services Foundation.

Conflict of Interest: None to declare.

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Teschke, K., Marino, S., Chu, R. et al. Public Opinions about Participating in Health Research. Can J Public Health 101, 159–164 (2010). https://doi.org/10.1007/BF03404364

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  • DOI: https://doi.org/10.1007/BF03404364

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