A new global study recently conducted by the Center for Information & Study on Clinical Research Participation (CISCRP), a Boston-based independent nonprofit, indicates that public trust and perceptions about clinical research and the people who participate in them have shifted and improved significantly during the past seven years.
The study, conducted online between January and March 2013 among a global community of health information seekers and clinical research participants, was designed to track changes in public perceptions and attitudes about clinical research and to gather new insights into study participation experiences. In total, nearly 6,000 people completed the survey making the 2013 Perceptions & Insights study one of the largest international surveys focusing on clinical research ever conducted.
Key findings of the study include:
- Whereas 45% of the public said that they don’t trust research sponsors to inform the public quickly about safety concerns in 2005, only 28% do so in 2013;
- In a 2005 Harris Interactive poll, 46% of respondents believed volunteers were gambling with their health by participating in a trial; the new CISCRP survey found only 23% of respondents agreed with that statement;
- The Internet has now surpassed traditional media (newspaper, radio and television) as the largest source for information although the majority (60%) of study volunteers reports that they have not used social medial to learn about clinical research.
- A high percentage of patients who were ineligible to participate in one clinical trial decided not to participate at all, instead of searching for other clinical trial opportunities
“It was critical to conduct this new study given the importance the clinical research enterprise now places on implementing truly patient-centered research,” said Kenneth Getz, the lead investigator for the study and the director of sponsored research programs at the Tufts Center for the Study of Drug Development (CSDD). “Despite the clinical research enterprise’s desire to better understand and engage patients, no large scale assessment of public and patient attitudes and perceptions had been conducted in more than seven years” said Getz.
CISCRP plans to conduct the international poll every other year to monitor and track changes in both public opinion about, and patient experiences participating in, clinical research. CISCRP has produced a series of reports containing detailed results of the 2013 Perceptions & Insights Study. These reports can be downloaded at www.ciscrp.org.
The Center for Information and Study on Clinical Research Participation (CISCRP), founded in 2003, is a non-profit organization dedicated to educating the public and patients about the important role that clinical research plays in advancing public health. As part of its mission, CISCRP provides a variety of services designed to assist clinical research stakeholders in (1) understanding public and patient attitudes and experiences and (2) improving volunteer participation experiences and satisfaction.