In 2015, the Center for Information and Study on Clinical Research Participation (CISCRP) conducted a global study on public and patient perceptions of clinical research. They have published four reports on the findings.
Between April and May 2015, CISCRP conducted an online international survey. A total of 12,009 respondents completed the survey. 74% had never participated in a clinical trial, 26% had participated.
Most (81%) respondents agree that clinical research studies are ‘very important’ to the discovery and development of new medicines. A significantly lower proportion of respondents from Europe (73%) agree that clinical research studies were ‘very important’ compared to other regions. Ahigher percentages of respondents with higher education and in higher income brackets find clinical research studies ‘very important’.
The majority of respondents claim to be ‘somewhat/very informed’ on clinical research (81%), A significantly higher proportion of respondents from Europe (31%) report not being informed on clinical research particularly in comparison to respondents from North America (14%).
Significantly higher percentages of less educated respondents and those in lower income brackets report not being informed. Younger respondents also report being less informed on clinical research compared to older respondents.
Respondents report placing the most trust in the clinical research information provided on the online clinical trial registry maintained by their government. This is followed by posters or pamphlets found in a doctor’s office or clinic. Respondents indicate that they least trust the clinical research information relayed through advertisements about clinical trials on television or in newspapers.
While most respondents would prefer to receive clinical research information from their primary care physician (51%) or research study staff (44%), much lower proportions actually receive information from those two sources (23%).
The majority of respondents agree that knowing the potential risks and benefits (mentioned by 75%), as well as the purpose of the clinical research study (mentioned by 69%), are the most valuable pieces of information to know prior to making a participation decision. Also important is the physical location of the medical center and whether his/her confidentiality would be protected.
The top factors that are most likely to influence participation decisions are if a study/drug or treatment would help him/her (86%), if a study drug or treatment would cure him/her (84%), a doctor recommendation (83%), and if there were no risks involved (82%).
Research studies are rarely considered as an option at doctor visits – well over half of the respondents (58%) mention ‘never/not very often’ considering research as an option in discussions with their doctor. While most (85%) reported being generally comfortable presenting any clinical research information they find to their doctor, only 17% have actually presented clinical research information to their doctor. Among those respondents who presented information, the majority (63%) ended up joining the study.
The majority of respondents perceive clinical studies to be safe (89%). Respondents outside of North America are less likely to perceive clinical studies as safe – particularly in Europe where 16% of respondents report clinical studies to be ‘not very/not at all safe’ compared to 9% of respondents who think the same in North America. The possibility of side effects remains the top perceived risk (43%).
You can access the full reports on the CISCRP website here.