Most in U.S. think clinical trials safe; public registry would boost trust, poll shows

Two-thirds of Americans queried in a December survey feel clinical trials and studies are safe for participants, the Center for Information and Study on Clinical Research Participation reports.
CISCRP, with Cambridge, Mass.-based Opinion Dynamics Corporation, conducted the nationwide survey of 1,000 adults Dec. 14-15 to gauge public attitudes regarding clinical studies after media reports called into question the safety of some prescription medicines.
Asked whether they felt “in general” that clinical trials or studies are safe, 49% responded “somewhat,” while 17% agreed clinical trials are “very safe.” Five percent thought clinical research “not safe at all,” and 18% were not sure.
Response to a question gauging public trust of information received from clinical research professionals showed support for public access to study results.
Fifty-seven percent of respondents supported the idea of the federal government asking “all organizations conducting clinical research trials or studies” to “report the results on a public Web site,” agreeing pubic access would increase their trust in the information.
Twenty percent said public access to study results would increase their trust “not at all,” and 15% said it would contribute “not very much” to their trust of clinical research.
CISCRP’s goal is to foster a strong public understanding of the clinical research process in order to encourage active, informed participation in clinical studies and trials, President Roni Thaler explained. The group also seeks to “educate and empower” medical and research professionals and policymakers
A third survey question revels how far CISCRP has to go to achieve its goals. Eighty-seven percent of respondents said no doctor or healthcare provider had ever talked to them about participation in a clinical research study. Only 12% said they had been asked, while 1% were not sure.
The room-for-improvement responses captured the attention of CISCRP Chairman Kenneth Getz.
“These results are yet another indicator that the American public’s trust in the clinical research enterprise is deteriorating. One out of seven people feel that clinical trials are not safe and another 18% say that they are not sure. Our results also show that – despite much focus on clinical trial registries in the media – only half (57%) of American’s believe that greater information transparency is a key to building public trust. We must address this declining level of trust,” Getz said.
According to information from the CISCRP Web site, while approximately 50,000 clinical trials currently are underway in the U.S., 80% of trials are delayed at least one month because of unfulfilled enrollment.
The American Medical Association has called for HHS to establish a comprehensive registry for all clinical trials conducted in the U.S. The registry would ensure all trial results, positive and negative, would be made public and engender transparency in industry sponsored trials, AMA said. (see Washington Fax 6/23/04b)
The International Committee of Medical Journal Editors also has moved to support registries. Research results based on any trial starting enrollment after July 1, 2005, will not be published in ICMJE journals unless the trial was registered in a public database. (see Washington Fax 9/10/04)
The CISCRP poll is the first of a series, Thaler explained. Also slated are a follow-up on safety issues to gauge perception of trial safeguards and a poll of whether the public feels differently about federally funded and industry trials.
CISCRP/ODC also plan queries into the perceptions of various age groups regarding clinical studies and trials and into the public’s perception of racial disparities in clinical trials.
-- Shirley Haley
Survey results are available on the CISCRP Web site at
http://www.smartparticipant.org/information/survey.asp

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