Awareness for clinical research has grown over the years. The people who are participating in clinical trials are probably the ones spreading the word, right? Well, not exactly. While there are a fair amount of patient advocacy groups and patient opinion leaders (POLs), the majority of study volunteers are staying silent post-trial. A 2013 CISCRP online survey found that 88% of participants rarely talk about clinical research with others after their study concludes.1 The same CISCRP survey found that 95% of study volunteers said they would consider participating in another clinical trial in the future.1 If people are satisfied with their trial experience and they would do it again, why aren’t they talking about clinical research with others?
Low levels of public appreciation
Although research shows that public perceptions of clinical trials have improved in recent years, there’s still a long way to go. As a top source for information on clinical research, the media has had a significant impact in shaping attitudes. Unfortunately, media coverage on negative stories and misconduct has led to poor public trust. Research subjects have been portrayed as guinea pigs, which has led to an overplayed misconception, based on the notion that guinea pigs don’t have any rights. However, as we know, that couldn’t be further from the truth. Patient protection is a top priority in clinical research, and study participants must understand the potential risks and benefits, and their rights, as part of their consent.
Study volunteers are a minority in society (less than 10% of Americans have participated in a clinical trial2), and many people don’t fully understand the commitment that’s involved in participating in a clinical study. A 2006 CISCRP survey asked respondents which group of people they thought makes a greater contribution to mankind. By selecting one option only, 40% said organ donors; 29% said blood donors; 10% said people who raise money for charity by running in a race; and 9% said clinical trial volunteers.3 The same survey found that 34% of Americans said that they do not admire those who volunteer for clinical trials.3 It’s no surprise then, that study volunteers aren’t jumping at the chance to talk about clinical research. A fear exists that it might not be well received by others, or that they will feel like they’d have to defend themselves.
Public support (or lack thereof) is slightly less discouraging than it was in 2006, but compared to other ways in which people improve public health, clinical trial volunteers are still underappreciated by many. A 2013 Research!America poll asked people to rate how much they admire volunteers, and 69% say they admire organ donors a great deal, followed by admiration for those who give blood (61%); and only 37% of respondents admire clinical trial volunteers.2
Lack of follow up
Not only do volunteers want to know that their participation mattered and that it was appreciated, but many also want to know what ultimately came of it. After all, what’s a story without an ending? Receiving information about the results after the study has ended was considered an important factor in choosing to participate in a clinical research study by 71% of study volunteers.1 In reality though, most patients never have received this meaningful information — just as most research staff have never been able to provide it to patients. More than 90% of study volunteers want to know the results of their clinical trial.4 To do this, they can try to search for it and interpret the findings on ClinicalTrials.gov, but that can be difficult, inconvenient, and often takes years to become public.
Providing trial results can improve transparency and help close the loop with patients. One way to do that is by sending the trial results directly to patients. CISCRP’s Communicating Trial Results program helps provide study volunteers with an easy to understand summary of the trial outcome. Sponsors provide CISCRP with the technical results of a trial, which are translated into plain language and sent to sites to be delivered to study volunteers. The idea is to thank patients by providing ongoing communications and keep them informed post-trial. It’s estimated that 30 sponsors will be using this program by 2014, and it’s expected to keep growing.5 These efforts can empower the volunteers who make research possible with information, even if it’s years after their participation ended.
While we can work towards improving some of these factors, there will always be one that we can’t. Some participants may choose not to talk about their experience in a clinical study, because it’s too personal. Some illnesses are associated with stigma; others simply prefer to keep health matters private. Each person has unique circumstances that bring him or her to a trial, and one’s medical history doesn’t need to be broadcasted. No matter what drives someone to participate in a study, every volunteer is helping advance medicine, and their personal preference to share that experience must be respected.
It’s certainly not a patient’s responsibility to talk about clinical research with others, but a study volunteer’s actual experience can be a very powerful way to build awareness. Much more can still be done to change public perceptions and instill value and appreciation to study volunteers. Proving closure via study results and treating patients as valued partners in the research process is a great start. At the very least, it can only help build stronger relationships with patients.
1. CISCRP (2013). Perceptions & Insights Study – Report on Study Participant Experiences. https://www.ciscrp.org/wp-content/uploads/2014/01/2013-CISCRP-Study-Study-Participant-Experiences.pdf
2. Zogby Analytics for Research!America (2013). National Poll: Clinical Research. http://www.researchamerica.org/2013clinicaltrialspoll
3. CISCRP (2006). Survey of 900 people’s perceptions of clinical research. https://www.ciscrp.org/wp-content/uploads/2014/03/ciscrp_data_archive_ciscrp_surveys_and_polls.pdf
4. PLoS Medicine. Shalowitz, D. and Miller, F.(2008). Communicating the Results of Clinical Research to Participants: Attitudes, Practices, and Future Directions. http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.0050091
5. CISCRP (2014). Getz, K. and Hallinan, Z. Creating a Standard Practice for Communicating Lay Language Trial Results to Study Volunteers. https://www.ciscrp.org/wp-content/uploads/2014/02/standard_practice_research_practitioner.pdf