Participant Voice Public Report
Your Voice Matters
Continuing our commitment to improving research participant experience, the University of Rochester is part of "Empowering the Participant Voice," a project funded by the National Institutes of Health through a grant awarded to Rockefeller University.
In collaboration with other research universities, we have created a survey to collect feedback from research participants across the University. The survey is sent to participants after they join a research study, and again when they have completed it.
We collect this feedback and share our findings with groups including research teams, medical center departments, and ethics boards. The results of the survey are also available on this website, and will be updated annually.
To request EPV reports from previous years, email research_help@urmc.rochester.edu or call (585) 275-2107.
2025 Annual Report
The Empowering the Participant Voice survey was emailed to all research participants among a subset of clinical trials conducted at the University of Rochester. Only studies listed in our internal clinical trials system were included. This does not represent all research conducted by the University. Participants were sent the survey if they enrolled, participated and/or completed a study between June 1, 2024, and May 31, 2025. The survey was sent to 400 participants; 121 (30%) responded. To boost the number of responses, an incentive ($50 gift card with a 1:25 chance in winning) was offered.
The survey takes about five to ten minutes. Participants completed the survey anonymously and could skip any question.
The survey collected information about:
- How demanding the study is perceived to be
- Satisfaction with the research experience
- Informed consent and any feelings of coercion
- Ease of contacting the research team
- Being treated with respect and courtesy, and being valued
Younger adults and persons from historically underserved populations were less likely to complete the survey.
Demographics of Survey Respondents (121 Total Respondents)
| Age | Number of Respondents | Response Rate in Each Category |
|---|---|---|
| 18-34 | 7 | 6% |
| 35-44 | 12 | 10% |
| 45-54 | 5 | 4% |
| 55-64 | 30 | 25% |
| 65-74 | 44 | 36% |
| 75 and over | 23 | 19% |
| Ethnicity | Number of Respondents | Response Rate in Each Category |
|---|---|---|
| No–not Spanish/Hispanic/Latino/a/x | 115 | 96% |
| Yes–Spanish/Hispanic/Latino/a/x | 4 | 3% |
| Sex | Number of Respondents | Response Rate in Each Category |
|---|---|---|
| Female | 60 | 50% |
| Male | 59 | 49% |
| (blank) | 2 | 1% |
| Race | Number of Respondents | Response Rate in Each Category |
|---|---|---|
| Asian | 0 | 0% |
| American Indian or Alaskan Native | 2 | 2% |
| Native Hawaiian or Other Pacific Islander | 0 | 0% |
| Black or African-American | 4 | 3% |
| White | 113 | 93% |
| Not Reported | 2 | 2% |
Most people would recommend joining a study to their friends and family.
Would you recommend joining a research study to your family or friends?
Participants were asked to score their overall experiences on a scale of one to 10.
- The average score for all participants was 8.9.
- For Hispanic participants the average score was 9.75.
- For Black/African American participants the average score was 9.25.
Rating of Overall Experience (10 Being Best)
Participants rated several areas highly:
- Our participants felt listened to.
- They were treated with courtesy and respect.
- They felt their cultural background and their language differences were respected.
- They did not feel pressured to join a study.
These are areas of the research experience where improvements should be made:
- We should create ways to help participants feel they are valued partners in the research process.
- We should evaluate our informed consent process so patients know better what to expect in a study.
- We should create easier ways for participants to get in touch with study teams.
If you have any questions about this project or the results, please email research_help@urmc.rochester.edu or call the Research Help Desk at (585) 275-2107.
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