In medical research, the theory of “if you build it, they will come” doesn’t always hold true. To ensure patient participation in their studies, researchers must consider the patient’s perspective from protocol design to trial completion. This is the third in a series on patient centricity in clinical trials. (Here are the first and second in the series).
The decision-making process for taking part in a clinical trial is complex. Here, we’ll explore patients’ considerations and how researchers can maintain patient centricity throughout the trial lifecycle for higher engagement.
Understand What Matters Most to Patients
Why would someone take a chance on a clinical trial, and how would they find out about studies? To explore these questions, Antidote conducted a small survey (n = 145) of patients who have indicated high interest and/or had taken part in a clinical trial for a variety of conditions. We also considered a well-known, large, and recent survey on this topic by the Center for Information and Study on Clinical Research Participation (CISCRP), CISCRP’s 2017 Perceptions and Insights Study (n = 12,427 patients; 18% have participated in a clinical trial). Here are our findings:
- Patients are altruistic. When we asked patients the number one reason they would take part in a clinical trial, a third (33%) said “driving medical research forward to benefit others with my condition.” One person even wrote in an answer, “All of the above, but knowing that I made a difference in someone’s life—now that’s cool.” This is corroborated by CISCRP’s “Report on the Participation Experience,” in which “help advance science, treatment of disease/condition” was the number one driver among those surveyed who had been in a clinical trial. (Note: The CISCRP survey allowed patients to select more than one response to each question throughout, while our survey required that patients select one answer only.)
- Patients want access to better medications and education on their condition. In Antidote’s survey, the next top reasons for taking part included: “gaining access to treatments in development” (21%) and “learning more about my condition” (12%). While the CISCRP survey revealed 44% were interested in “obtaining better treatment,” the educational piece was sixth on their list of the eight reasons patients provided.
- Patients are worried about safety. The top reason patients would not participate was “worrying about whether the drug or procedure being tested is safe” (57%), according to our survey. CISCRP’s “General Perceptions and Knowledge on Clinical Research” showed that 40% of people were worried about the possibilities of side effects.
- Patients are willing to be involved in trial design. When we asked whether they would be willing to meet with a company planning a clinical trial to provide a patient perspective, 75% of patients said yes, and another 23% said maybe.
- Patients learn about trials in a variety of ways. The majority of patients we surveyed (41%) learned about clinical trial opportunities through online search listings, while 31% learned about them through social media. (Note: This is likely a skew toward web channels due to our sample; Antidote is a digital patient engagement company.) CISCRP’s results showed physicians and advertisements as the top ways patients learn about trials.
- Patients want details upfront. We asked patients, “If you were looking for a trial, what information would be most useful to you as you were researching various trial options? (choose one).” Our survey showed that the most important pieces of information to patients looking for a trial are: “descriptions of procedures or drugs being tested” (29%) and “details on time commitment” (25%). “Information about whether you will be able to stay on the drug after the trial” and “information about past trials of the procedure or drug being tested” were also of interest in our survey, while details about the sponsor, site, or financial compensation were the least important. CISCRP asked, “What information do people want to know before making a decision to participate? (multi-select).” They uncovered: “potential risks/benefits,” “purpose of study,” and “types of medical procedures” as critical pieces of information. Patients were also interested in protection of confidentiality, location of the site, length of participation, and cost/reimbursements.
Following up on these insights about the mindset of willing clinical trial participants, in our next installment of this blog series we’ll explore how this can translate into patient-centric trial design and engagement.
Get in Touch
We’d love to hear about how you’re taking patient decision-making into consideration while designing and recruiting for trials! Shoot us a note at firstname.lastname@example.org.
Author: Lisa Conroy, Director of Communications, Antidote
Related – The Patient Voice: Improving Patient Experience by Understanding Patient Perspective
Saturday, April 28 during ACRP 2018
In a global survey conducted in conjunction with CISCRP, TransCelerate Biopharma, Inc. found that the vast majority (94%) of patients and caregivers felt that being aware of clinical trials conducted in their community was important. However, 79% of respondents reported being unaware of clinical trials for the condition they were most interested in. Explore how a consortium of leading biopharmaceutical companies has been utilizing this survey and other feedback mechanisms, such as Patient Advisory Boards, to further understand the patient perspective as it works to close this gap and design additional solutions to improve the patient experience. Insights from this global survey will be shared in parallel with what TransCelerate is doing to decrease patient burden, enable better-informed patients, and improve clinical research awareness, study participation, and engagement.
Speaker: Jeneen Donadeo, Program Director, TransCelerate Biopharma, Inc.