Brief 20: Awareness of Clinical Trials and Attitudes About the Use of Personal Medical
Information for Research
In this HINTS Brief,
we explore awareness of clinical trials and attitudes about the use of personal
medical information for research in the United States.
Clinical trials, which are health-related or biomedical research studies, are conducted
to develop or test new medical treatments and medications. Clinical trials may benefit
individual volunteers by providing access to new treatments before they are available
outside of trials. Clinical trials also serve the overall population by evaluating
the safety and efficacy of medical treatments, which may lead to improved treatment
options in the future. In addition to research that involves direct treatment of
patients in a clinical setting, other medical research involves the analysis of
existing medical records and clinical data to assess the effectiveness of various
treatment methods and patient care approaches.
Clinical trials and medical records research rely on the willingness of volunteers
to participate in research protocols and share their medical data for research purposes;
however, encouraging participation in research can be challenging. Understanding
current levels of awareness of clinical trials, assessing attitudes toward sharing
clinical data for research, and identifying factors related to awareness and attitudes
can inform efforts to promote participation in health-related and biomedical research.
In this HINTS Brief, we explore U.S. adults’
awareness of clinical trials and attitudes about the use of personal medical information
Sociodemographic Differences in Awareness of Clinical Trials and Attitudes Toward
A study using HINTS data from 2008 shows that overall, awareness of clinical trials
is fairly high, with over 65 percent of the population indicating that they had
heard of clinical trials. Agreement with the statement that scientists should be
able to use medical information for research purposes was also encouraging, with
over 70 percent of the population indicating at least some agreement with this statement.
However, awareness of clinical trials and attitudes toward use of medical information
for research differed by race/ethnicity, income, and education.
Compared with white respondents, a significantly smaller proportion of black respondents
and Asian American respondents had heard of clinical trials. This trend also held
true for Hispanic respondents compared with non-Hispanic respondents. Black respondents
reported less positive feelings about sharing their medical data than white respondents.
Awareness of clinical trials increased with respondents’ level of annual income.
Compared with respondents reporting incomes less than $35,000 per year, those with
higher incomes demonstrated greater awareness of clinical trials. Meanwhile, when
awareness of clinical trials was controlled for in a multivariable model, no significant
differences in attitudes toward sharing medical data were observed across income
HINTS respondents who reported very low levels of education were significantly less
likely to be aware of clinical trials than those who had at least some college education,
a college degree, or a postgraduate degree. Attitudes toward sharing medical information
varied significantly with education in a multivariable model. The percentage of
respondents who agreed that their medical information should be available for research
purposes increased with increases in level of education.
Influence of Awareness of Clinical Trials on Attitudes Toward Sharing Medical Data
Having heard of a clinical trial was significantly and independently associated
with attitudes toward the use of medical information for research. Respondents who
were aware of clinical trials were significantly more positive about sharing medical
data for research than individuals who were not aware of clinical trials.
How Can This Inform Your Work?
Overall, rates of clinical trial awareness suggest that there is room for improvement.
Furthermore, differences in awareness observed by race/ethnicity, income, and education
can inform targeted efforts to promote awareness and participation in research.
Awareness of clinical trials is associated with more positive feelings toward the
use of medical information for research, suggesting that general familiarity with
research may be an important factor in shaping attitudes toward research. Creative
outreach efforts to foster awareness and participation among groups who have historically
been under-represented in research are warranted.
- Over 65 percent of the U.S. population has heard of clinical trials.
- Higher levels of clinical trial awareness are observed among non-Hispanic whites, adults with annual incomes greater than $35,000, and adults with at least some college education.
- Over 70 percent of the U.S. population agrees that their medical information should be made available to scientists conducting research if it could not be linked to them personally.
- Black respondents show less positive feelings about sharing their medical data than white respondents.
References Used in This HINTS Brief
Brown M, Moyer A. Predictors of awareness of clinical trials and feelings about the use of medical information for research in a nationally representative US sample. Ethn Health. 2010 Jun;15(3):223-36.
Questions used in this Brief
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