The authors declare that they no competing interests.
DG, HK, BL, DZ, LF designed the study. DG, HK, BL, DZ, LF CS prepared the survey questionnaire. CS and BL carried out qualitative research that informed the questionnaire. AF assisted with the statistical analyses. All authors have discussed the findings, read, revised and agreed to the final manuscript. All authors read and approved the final manuscript.
In recent years, reduced participation has been encountered across all epidemiological study designs, both in terms of non-response as well as refusal. A low response rate may reduce the statistical power but, more importantly, results may not be generalizable to the wider community.
In a telephone survey of 1413 randomly selected members of the Australian general population and of 690 participants sourced from previous studies, we examined factors affecting people’s stated willingness to participate in health research.
The majority of participants (61 %) expressed willingness to participate in health research in general but the percentage increased when provided with more specific information about the research. People were more willing if they have personal experience of the disease under study, and if the study was funded by government or charity rather than pharmaceutical companies.
Participants from previous studies, older people and women were the groups most willing to participate. Younger men preferred online surveys, older people a written questionnaire, and few participants in any age and sex groups preferred a telephone questionnaire.
Despite a trend toward reduced participation rates, most participants expressed their willingness to participate in health research. However, when seeking participants, researchers should be concrete and specific about the nature of the research they want to carry out. The preferred method of recommended contact varies with the demographic characteristics.