from IOM also calls on the CRR to be attentive to the ethical underpinnings of clinical research as it considers a broad range of workforce and infrastructure-related issues that span the full spectrum of clinical research.
During its second meeting, the CRR held a symposium on Public Confidence and Involvement in Clinical Research chaired by Mary Woolley, President of Research!America and liaison to the CRR from the IOM’s Health Sciences Policy Board. This report summarizes the presentations given at the three panel sessions of the symposium.
The first panel explored what we know about the public’s opinion of clinical research. Mary Woolley opened the discussion with findings from Research!America commissioned polls of the general public. The main message from this research is that Americans take great pride in the fact that the U.S. leads the world in medical research. Americans also continue to support basic research, as they have for the past 20 years, even if it brings no immediate clinical benefit. They support research on health disparities and prevention. Furthermore, there is strong public support for increasing the federal research budget and for furthering research in the private sector. These data challenge the idea that Americans are skeptical and suspicious about the research enterprise.
Kenneth Getz, member of the CRR and President and Publisher of CenterWatch, which provides information services used by patients, pharmaceutical, biotechnology and medical device companies, CROs and research centers involved in clinical research around the world, presented data on industry-sponsored research. According to his data, approximately 675,000 U.S. residents participated in industry-sponsored clinical research in 1999; however, 6.5 million people had to be contacted in order to recruit those 675,000 participants. According to data collected through an on-line survey of approximately 1050 former research participants, people chose to be research participants primarily to find relief from a medical condition. One-third reported they were motivated by the opportunity to advance science. Less than 10 percent of those surveyed said they participated for the stipend or because they could not afford care. Concerns of research participants include fear of receiving a placebo, concern about side effects, and fear of losing access to an effective treatment at the conclusion of the trial. Overall, most research participants were satisfied with the research experience, saw the researchers as professionals, felt well informed about the risks of participating, and would be willing to participate again. One area participants would like to see improve is better follow-up after the study, both follow-up care and information about the outcome of the trial. Additional information, including a database of industry-sponsored and NIH-sponsored clinical trials and a publication that summarizes findings from this survey, are available through CenterWatch.
Robert Comis, President of the Coalition of National Cancer Cooperative Groups, Inc. (CNCCG), an organization designed to ensure that patients have access to clinical research, presented [Harris internet and telephone poll data] on various stakeholders’ perceptions about clinical research (1000 random individuals, 6,000 cancer patients, 200 primary care physicians, 225 oncologists, 200 nurses, and 100 journalists). Of the cancer patients surveyed, only 15 percent were aware that they could participate in clinical research as part of their care. Of that