Without patients willing to enroll in clinical research, there would be no studies and therefore none of the potentially life-saving breakthroughs pharma is laboring to identify. As an industry, it is of primary importance that we continue to encourage and increase patient participation in clinical trials. We know we cannot rely solely on sites to recruit patients from within their databases: nearly two-thirds of study sites fail to meet their patient enrollment goals and the average dropout rate across all clinical trials is as high as 30%.1
Identifying and encouraging patients to seek out clinical research on their own is a crucial component of enrolling clinical trials, and deeper insight to help ensure we are doing that work efficiently will benefit all industry.
To that end, every other year, CISCRP conducts their Perception & Insights Study, which explores how patients navigate the highly personal decision to participate in clinical research, and their general perceptions of clinical research. Continuum Clinical is proud to be a sponsor of the biennial study and a survey workgroup contributor. Courtney Firak, Continuum Clinical Director of Patient Advocacy, who lead our efforts with CISCRP notes, “It’s crucial that we partner with organizations like CISCRP on their research to uncover trends that can impact our ability to reach, motivate and ultimately randomize more patients into clinical trials.”
This year, CISCRP surveyed 12,451 respondents, made up of those that have participated in clinical research and those that have not. The results of this survey were published December 12 and provide actionable data that will help our industry move closer to accomplishing our shared goal of increased trial participation.
Although the research includes many useful insights, one stands out as most actionable from a patient recruitment and retention standpoint: respondents indicated in a variety of ways that they would be more likely to participate in clinical research if they had express buy-in from their Primary Care Physician (PCP).
While we believe that patients should feel empowered to make the decision to participate in clinical research autonomously, we understand their desire to receive support from their doctors. This critical touchpoint can be strengthened by supporting the patients if and when they decide to talk to their PCP about clinical trial participation. According to Firak, “In addition to patient education materials, recruitment campaigns should include physician-facing materials that will allow for an informed discussion between the patient and their physician.”
Data point 1:
Nearly 50% of patients trust their primary care physicians when making decisions to participate in a clinical trial.
When asked about whose advice they would trust the most when deciding whether to participate in a clinical trial, nearly half (49%) of respondents mentioned they would trust their PCP above a site research doctor (19%) or their significant other (10%). This indicates a major opportunity to reach patients and their physicians at a critical moment. Sponsors typically request patient-facing materials, site-facing materials, and, on occasion caregiver-facing materials. However, this data suggests that if we only focus on these standard study materials we’re missing out on a large opportunity for an audience of influence for patients.
Data point 2:
Clinical trials rarely raised as option during discussions with doctors.
As patient perceptions of clinical trials continue to skew positive, awareness of clinical trials has room to improve. When respondents were questioned about if they had ever been asked to participate in a clinical research study, a majority (62%) responded “no”. Of the remaining 38% that indicated that they had been asked to participate in clinical research, only 18% indicated that their PCP initiated a discussion about research participation. Out of all respondents only 7% of people were asked to participate in a clinical trial by their doctor.
Data point 3:
64% of patients don’t consider clinical research studies as alternative care option.
When asked about discussing treatment or medication options with their PCP and/or a specialist, the majority (64%) of respondents indicated they “never” or only rarely considered clinical research studies as an option. This shouldn’t come as a surprise: considering that clinical trial awareness is still low and the majority (62%) of respondents have never been directly asked to participate in a clinical trial, it makes sense that patients don’t consider research as a viable option. An even larger disparity in the data tells us that almost half (49%) of patients trust their PCP when making decisions to participate, and only 7% of respondents have been asked to participate in clinical research by their PCP’s.
Data point 4:
34% of patients do not feel confident that they could convince their doctor that clinical research is a viable option.
So far, we have learned that clinical trial awareness is low, and that doctors are not recommending clinical trials to their patients. The data also shows that 34% of respondents felt not very confident, or not at all confident that they could convince their PCP that participating in a clinical trial could be a viable option for them. This data point points to an opportunity to provide patients with physician-facing materials that could aid patients when and if they decide to seek their PCP’s buy-in.
Looking Ahead:
Slight increase in patients learning about clinical trials from their PCP.
In 2013, 14% of people that participated in clinical trials learned about the study from their PCP/specialist. This year, 16% of people that participated in clinical trials learned about the study from their PCP/specialist. An increase of only 2% in the last 6 years. This shows that physicians and specialists are making progress in recommending clinical trials as an option, but it is proof that further work needs to be done to reach physicians so that they can either provide or be informed on all of their patients’ options. Firak concludes, “We are still far from where we need to be as an industry but the data points to positive improvements as well as abundant opportunity for growth within our industry.”
Who is CISCRP?
CISCRP is a non-profit organization that is dedicated to providing education and information about clinical research to the general public. They have been conducting the Perceptions and Insights survey biennially since 2015. We were so pleased to get the opportunity to participate in this year’s survey because this is the only survey that gauges the public’s perceptions of clinical research and their willingness to participate, as well as surveying individuals who have previously been part of a clinical research study.
References
Koeseter, A. (2018, September 21). How one pharmaceutical company is reinventing the clinical trial. Retrieved from https://www.statnews.com/2018/09/21/clinical-trials-reinvention-janssen/
