CISCRP’s 2019 Perceptions and Insights Study

It is hard to believe two years have passed since CISCRP’s last Perceptions & Insights Study. We are excited to announce the 2019 study results are in! Over 12,450 people from around the world provided their opinions on various aspects of clinical research this year revealing significant new insights on patient engagement preferences.

Since 2013, CISCRP has conducted the Perceptions & Insights study on a biannual basis in order to monitor trends and identify opportunities to better inform and engage the public and patients as partners in the clinical research enterprise. Annick Anderson, Director of Research Services, notes, “The 2019 Perceptions & Insights Study offers the most comprehensive look to date at the ideal clinical trial experience from the global public and patient perspective – allowing stakeholders to model their patient engagement strategies most effectively around these patient needs.”

The 2019 study captured the experiences of over 3,600 study volunteers across diverse therapeutic areas, a significant jump from the 2,000 responses collected in 2017. The results continue to support that study volunteers generally have positive experiences, with 45% rating the care and attention they received during the trial as better than the care they would have otherwise received.

Did you receive any reports or updates on the results of the study 
once you completed the clinical research study?

Year Yes No

Sample size: 
1,828 in 2017; 3,054 in 2019.   
Base: respondents who participated in clinical trial, excludes “don’t remember” 

Similar to 2017, a significant percentage (96%) would be willing to participate in another study in the future – which is another strong indicator of overall satisfaction. However, areas of improvement remain, for example – a large proportion (39%) of study volunteers reported not ever hearing anything back from the site or the sponsor after their participation ended – demonstrating that post-participation engagement activity should be an area of focus for stakeholders. The study additionally takes an in-depth look at the burden of participation and identifying areas where attention is needed – for instance, close to 50% of clinical trial participants reported traveling at least 30 minutes or more one-way to the study clinic for their visits.

A preliminary review of specific sub-groups—such as minority populations and their motivations to participate in a clinical trial– shows that populations of African descent were significantly more likely to find it “very important” (73%) for their primary care physician or specialist to be aware of clinical research studies being conducted in their communities compared to their Caucasian counterparts (67%). This finding highlights the importance of enabling local health care providers to discuss clinical trial opportunities with their patients and driving inclusion of minority populations in clinical trials. Potential costs and reimbursements associated with clinical trial participation, as well as compensation for time-off from work were also particularly important to this patient population.

To access insights and findings from this recent study, visit CISCRP’s Perceptions and Insights webpage. The 2019 reports will be posted and available for download this Fall. These are available free of charge, however, interested parties are encouraged to provide a donation for the reports. CISCRP will also be presenting the results of the Perceptions & Insights study at industry conferences, company meetings, and other forums in the coming months.

Written by Jasmine Benger, Senior Project Manager of Research Services

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