Last year, CISCRP conducted a survey of over 12,400 public and patient respondents from around the globe to gather insights on their perceptions and insights on clinical research. This study, conducted in 2013, 2015, and again in 2017, serves to establish routine global assessments of public and patient perceptions, motivations, and experiences with clinical research participation in an effort to monitor trends and identify opportunities to better inform and engage the public and patients as stakeholders and partners in the clinical research enterprise.
Annick Anderson, Director of Research Services, notes, “Sponsors and other clinical research stakeholders will be able to leverage the findings in this study to improve upon their own patient engagement strategies.”
The complete results of the survey have been summarized in 3 downloadable reports that can be found on the CISCRP website. Below are some of the highlights of the data gathered from the survey.
How do study participants first learn about clinical research opportunities?
Primary care doctors or specialists, research center doctors or study staff, and advertisements remain where study participants most often first learn about their clinical trial. Hispanics were more likely to learn of a study from their significant other, pharmacist or pharmaceutical company website. And younger people were more likely to have first learned of a clinical trial from online patient communities or through social media.
How important is it to be aware of clinical research studies in your own community?
In general, the majority (84%) of the public feels it is important to be aware of studies being conducted in their own communities. Notably, an even larger proportion (95%) indicates it is also important for their regular doctor to be aware of studies.
Why do people choose to participate in clinical trials?
Altruistic reasons and obtaining better treatment are the most common participation motivators followed by monetary compensation.
What information do people want to know before making a decision to participate?
When considering participation in a clinical study, the most important information includes the potential risks and benefits (83%) and the study purpose (75%). More practical aspects closely follow such as the medical procedures required, confidentiality protection, physical site location, potential costs and reimbursements, length of participation, and access to a study summary.
How does knowledge impact clinical research perceptions?
People who are more informed about clinical research generally express more positive views towards the enterprise and want to be aware of clinical studies being conducted in their own communities. People who are less informed about clinical research are less likely to trust pharmaceutical companies, less likely to think clinical research is important to the discovery of new medicines, are less interested in being aware of studies conducted in their communities, and are less likely to think that clinical trials are safe.
Do people want to know the results of their clinical trial?
As found in prior studies, the majority (91%) of the public finds receiving a study summary after participation to be very important. Yet 53% of those who have participated in a clinical trial have never received a report or an update on the study results once it ended. Furthermore, about a quarter of study participants reported never receiving any updates while they were enrolled.
Would clinical trial participants be willing to participate in another clinical study and would they recommend participation to others? Similar to findings in prior years, the vast majority (94%) of clinical trial participants reported being willing to participate in another clinical study. And most would also recommend participation to others if appropriate.
Annick Anderson, Director of Research Services, notes, “Sponsors and other clinical research stakeholders will be able to leverage the findings in this study to improve upon their own patient engagement strategies.”
The complete results of the survey have been summarized in 3 downloadable reports that can be found on the CISCRP website. Below are some of the highlights of the data gathered from the survey.
How do study participants first learn about clinical research opportunities?
Primary care doctors or specialists, research center doctors or study staff, and advertisements remain where study participants most often first learn about their clinical trial. Hispanics were more likely to learn of a study from their significant other, pharmacist or pharmaceutical company website. And younger people were more likely to have first learned of a clinical trial from online patient communities or through social media.
How important is it to be aware of clinical research studies in your own community?
In general, the majority (84%) of the public feels it is important to be aware of studies being conducted in their own communities. Notably, an even larger proportion (95%) indicates it is also important for their regular doctor to be aware of studies.
Why do people choose to participate in clinical trials?
Altruistic reasons and obtaining better treatment are the most common participation motivators followed by monetary compensation.
What information do people want to know before making a decision to participate?
When considering participation in a clinical study, the most important information includes the potential risks and benefits (83%) and the study purpose (75%). More practical aspects closely follow such as the medical procedures required, confidentiality protection, physical site location, potential costs and reimbursements, length of participation, and access to a study summary.
How does knowledge impact clinical research perceptions?
People who are more informed about clinical research generally express more positive views towards the enterprise and want to be aware of clinical studies being conducted in their own communities. People who are less informed about clinical research are less likely to trust pharmaceutical companies, less likely to think clinical research is important to the discovery of new medicines, are less interested in being aware of studies conducted in their communities, and are less likely to think that clinical trials are safe.
Do people want to know the results of their clinical trial?
As found in prior studies, the majority (91%) of the public finds receiving a study summary after participation to be very important. Yet 53% of those who have participated in a clinical trial have never received a report or an update on the study results once it ended. Furthermore, about a quarter of study participants reported never receiving any updates while they were enrolled.
Would clinical trial participants be willing to participate in another clinical study and would they recommend participation to others? Similar to findings in prior years, the vast majority (94%) of clinical trial participants reported being willing to participate in another clinical study. And most would also recommend participation to others if appropriate.
These are just a few of the high level findings. CISCRP has published more detailed findings in reports and journal articles. To read detailed reports, please visit the CISCRP Website. If your organization is interested in looking at detailed custom analysis by subgroup (e.g., gender; disease severity; race; ethnicity; age) and by specific therapeutic area, please contact Annick Anderson at annickanderson@ciscrp.org.
