randomization and placebo-controlled trials suggest a tendency to view the intervention arm of a trial as desirable or beneficial (see, e.g., Snowdon et al., 1997; Fallowfield et al., 1998; and Welton et al., 1999).
A survey and interviews conducted by the Advisory Committee on Human Radiation Experiments (ACHRE) produced a number of interesting findings about people’s understanding of research participation (ACHRE, 1995).5 The survey involved more than 1800 patients at 19 health care institutions across the country. A third of those surveyed believed that patients who participated in medical research usually or always benefited medically compared with those who did not. About two-thirds of the patients who had participated in research indicated that they had done so to obtain better treatment; a similar percentage reported that being in research gave them hope. Results from 103 in-depth interviews were generally consistent with the survey findings. The researchers, however, reported that patients who had been in diagnostic, epidemiologic, or survey research were more likely to differentiate between research and treatment than those who had participated in studies testing a potentially therapeutic intervention.
About three-quarters of those surveyed for ACHRE indicated a desire to help others or advance scientific knowledge. Suggesting that this altruistic motivation should be “tapped explicitly” when investigators are recruiting research participants, the ACHRE report explains that such an emphasis might reduce the potential for research to be misunderstood by underscoring “for patients that the primary objective of research is to create generalizable scientific knowledge” (ACHRE, 1995, p. 476).
Patients considering research participation may not necessarily anticipate improvement in their condition from the intervention being tested, but they may expect to receive better diagnostic evaluation, closer medical monitoring and follow-up, and more information about their condition (Mattson et al., 1985; ACHRE, 1995; Yoder et al., 1997; Madsen et al., 2000). For example, for Danish patients in a trial of interventions for inflammatory bowel disease, an important reason for participating in the research was “the expectation of being ‘a special patient’ during the trial” (Madsen et al., 2000, p. 463).
The survey also had some interesting findings on patient interpretations of terms used to describe research, specifically, medical research, clinical trial, clinical investigation, medical study, and medical experiment. The last term, medical experiment, produced the strongest negative associations. Respondents thought patients in medical experiments were at higher risk and were likely to fare worse than patients in medical research. Although patients in medical research were viewed as being at greater risk and more likely to get unproven treatments than those in clinical investigations or clinical trials, they were thought to be more likely to benefit medically. The term medical study was viewed more positively than medical research, perhaps because it seemed to suggest research involving records and not patients.