How Italian health consumers feel about clinical research: a questionnaire survey.

BACKGROUND

Because little information is available about the public's awareness of and attitudes toward clinical research, we planned a survey on a convenience sample of health consumers.

METHODS

A cross-sectional national survey was carried out using a questionnaire with seven multiple choice questions and two scenarios. A convenience sample of 2000 individuals aged 18 years and older was interviewed in nine out of 21 Italian regions.

RESULTS

Sixty-nine per cent reported they were aware of the existence of clinical research and 45% were aware of ethics committees; 29% and 49% indicated they would agree to participate in a prevention study or therapeutic randomized clinical trial, respectively. These percentages decreased when we asked about giving permission for a younger relative. Participants' awareness, opinions and attitudes varied significantly according to socio-demographic and geographical variables. People who were aware of clinical research tended to have a more open attitude toward participation [preventive study: odds ratio (OR) 1.6, 95% confidence interval (CI) 1.3-2.0, P = 0.001; therapeutic study: OR 1.3, 95% CI 1.1-1.6, P = 0.003), even after adjustment for confounding factors. A comparison with an independent and random sample of Italian citizens documented a difference in relevant case-mix factors and a different profile in terms of awareness, opinion and attitudes, which held after statistical adjustment.

CONCLUSIONS

Health consumers are generally not very aware of clinical research, and their attitudes towards participation seem to be related to the level of awareness. A few variables, such as age, sex, schooling and area of residence, are related to the study questions. These findings may help with the implementation of educational interventions, and underline the need to create meaningful partnerships between health professionals and consumer associations.