Americans Decreasingly Willing to Share Health Information, But Place High Value on Clinical Trials
An October 2023 survey, commissioned by Research!America in partnership with the Association for Clinical Research Organizations (ACRO), surveyed more than 2,000 U.S. adults and found that Americans are less willing to share personal health information than in years past. The latest survey found that 71% are willing to share personal information to advance health research; 70% to develop new treatments and cures; and 68% to improve patient care. Though most Americans say they are willing to share personal health information, survey results over time reveal a downward shift in public attitudes on this topic that calls for attention from the research community. 
In July 2017, 82% of Americans were willing to share their personal health information to advance medical and health research. By October 2023, this sentiment had dropped to 71%. Willingness to share information for researchers to better understand diseases and develop new ways to prevent, treat, and cure them also dropped from 84% in July 2017 to 70% in October 2023. Though 91% of Americans said they trust doctors and nurses to act in their best interest in October 2023, their willingness to share health information with health providers to improve patient care reflects the same downward trend from 79% in July 2017 to 68% in October 2023.
Survey data indicates that 75% of Americans admire people who provide access to their health records for research. However, the downward trend in public attitudes on willingness to provide that access indicates that there may not be adequate awareness about how health information is used in research and its impact in developing solutions to what ails us. Americans want scientists and researchers to share their research with the public and with policymakers. A January 2024 survey commissioned by Research!America found that 82% of Americans believe that it should be a part of a scientist’s job to inform the public about their research and its impact on society.
There is some positive news in the survey data. Despite some hesitancy in sharing personal health information, Americans feel positively about clinical research and are willing to participate themselves. In October 2023, survey data showed that 73% of Americans agree that they benefit from clinical research and its findings. A strong majority also agree that clinical trials are important to both advancing science (90%) and improving our nation’s health (87%). Of those who had not participated in a clinical trial, 50% of Americans said that they would be willing to do so.
There is also great interest in expanding conversations around participation in clinical trials. 87% of Americans agree that health care professionals should discuss clinical trials with patients diagnosed with a disease as part of their standard of care. Further, a growing share of Americans agree that consideration of clinical trial participation should be a part of regular health care whether patients are healthy or ill. In July 2017, 44% of Americans agreed. By October 2023, agreement had grown to 61%.
Check out our survey database to explore the full dataset from the 2023 October survey on clinical trials.