briefs

N U M B E R 2 0

Awareness of Clinical Trials 

and Attitudes About the 

Use of Personal Medical 

Information for Research

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 for 

research.

“Have you ever heard of 

a clinical trial?” 

“Scientists doing research should be 

able to review my medical information 

if the information cannot be linked to 

me personally.” 

Estimated U.S. Population Percentages

n Yes

n No

66%

34%

n Strongly agree

n Somewhat agree

n Somewhat disagree 

n Strongly disagree 

32%

40%

12%

15%

Health Information National Trends Survey, 2008 (HINTS, 2008); 

URL: cancercontrol.cancer.gov/hints: HINTS 2008 database, National Cancer Institute, 

DCCPS, Behavioral Research Program, Health Communication and Informatics Research 

Branch. Data collection January-May, 2008; Public data release February 2009.

Sociodemographic Differences in Awareness of 

Clinical Trials and Attitudes Toward Research

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. 

Race/Ethnicity

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. 

Income

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 levels. 

Education

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. 

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. 
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. 

Percent of Respondents Agreeing That 

Their Medical Information Should Be 

Made Available for Research, by Clinical 

Trials Awareness

n Aware of clinical trials

n Not aware of clinical trials

0

10

20

30

40

50

60

70

80

66.58%

75.61%

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.

Quick Facts

•	 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.

The National Cancer Institute (NCI) fielded the first Health Information National Trends Survey (HINTS) in 2002 and 2003, surveying 

6,369 Americans. Subsequent surveys followed in 2005 (5,586 Americans surveyed) and 2008 (7,674 Americans surveyed). HINTS was 

created to monitor changes in the rapidly evolving field of health communication. The survey data can be used to understand how 

adults use different communication channels to obtain health information for themselves and their loved ones, and to create more 

effective health communication strategies across populations.

HINTS Briefs provide a snapshot of noteworthy, data-driven research findings. They introduce population-level estimates for 

specific questions in the survey and summarize significant research findings that are a result of analyzing how certain demographic 

characteristics influence specific outcomes. Many Briefs summarize research findings from recent peer-reviewed journal articles using 

HINTS data.

For More Information on Cancer

•	 Call the NCI Cancer Information Service at 1-800-4-CANCER

•	 Visit http://cancer.gov

•	 Order NCI publications at https://cissecure.nci.nih.gov/ncipubs/

•	 Visit Facebook.com/cancer.gov and http://www.youtube.com/ncigov

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.

October 2011