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Research Study Participants in US Report Positive Experiences

Indicates Shift Toward Patient Engagement in Research

In one of the largest surveys of clinical study participants in the US, the majority of volunteers reported positive experiences. The findings from the Research Participant Perception Survey appear in the December 5 online edition of the New England Journal of Medicine. 

Clinical studies are the stage of medical research in which new treatments for PD and other diseases are tested in people. Each year, clinical studies rely on thousands of volunteers, including those who live with diseases such as PD, and those who are healthy. Yet the participants are rarely able to provide feedback on how their experience could be better.

Researchers wondered whether participant feedback could actually help to improve trials and speed progress.

A collaborative group of researchers from three institutions – Rockefeller University, New York, the National Institutes of Health Clinical Center, Bethesda, MD, and the University of Waterloo, Ontario, Canada – came together to ask participants about their experiences.  They developed the Research Participant Perception Survey, which they sent to participants at 15 clinical research centers in the US supported by the National Institutes of Health (NIH).

They received 4,961 responses from people of varied ethnic and racial backgrounds. Of the respondents, 61 percent were female. In addition, 37 percent were healthy volunteers. Researchers asked participants about issues important to research, such as informed consent (which ensures that participants understand the research, potential risks and their role in the study), their relationship with the research team and their motivations for joining a clinical study, and the quality of information, education and communication received during the study.


  • 73 percent of survey participants rated their overall research experience very highly (at nine or 10 on a 10-point scale).
  • Regarding the informed-consent process, 94 percent reported that did not feel pressured to join the study. Meanwhile, 67 percent felt that the process completely prepared them for participation while 25 percent felt it mostly prepared them.
  • 86 percent said they trusted the research team completely and, of this group, 99 percent reported that they were treated with courtesy and respect.
  • 66 percent said they would definitely recommend research participation to others and 31 percent said they would probably do so. Only three percent said they would not recommend participation.
  • Only 23 percent of respondents received study results. Of those who did not receive results, 85 percent said they would like to receive them.

What Does It Mean?

As one of largest and most comprehensive surveys of research participants at NIH-supported centers, PDF sees this study as an important first step in developing ways to incorporate the patient perspective into research.

Given the vital importance of clinical research and the volunteers who make it possible, it is encouraging that most respondents in this study had a positive experience.  However, there was room for improvement: one third of participants did not feel completely prepared for the study by the informed-consent process. Also, only 23 percent of respondents received the results of the research study in which they participated. Of those who did not receive results, 85 percent said they would like to have received them.

While a study of this nature provides important general feedback on participants' past experiences, moving forward PDF would advocate that all trials sites work to more formally include patient perspectives during studies.

PDF strives to foster such collaboration among researchers and patients through its Parkinson’s Advocates in Research program. We believe that when studies engage patients, and effectively incorporates their experiences, it will improve and accelerate the drug development process.

Overall, these findings will guide researchers in ensuring that future clinical studies are a positive experience for participants.  It may help them find ways to improve and speed trials, and thus the development of new drugs. 

Learn More: Patient Engagement in Research

Do you have questions about clinical studies or patient engagement for Parkinson's? Contact us at (800) 457-6676 or or use our free resources below.

Read “Patient Engagement in PD Research and Why it Matters”
Learn about Clinical Trials 
Learn about the Parkinson’s Advocates in Research (PAIR) Program 

Reference: Kost, RG, Lee, LM, Yessis, J, Wesley, RA, Henderson, DK, Coller, BS (2013) Assessing Participant-Centered Outcomes to Improve Clinical Research. New England Journal of Medicine DOI: 10.1056/NEJMp1311461

Source Date: Jan 22 2014