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.
Key words: Epidemiology, ethics, participation
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.
Mots clés: épidémiologie, éthique, participation
Footnotes
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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