Interested in speeding your trials, saving money, and improving participant retention rates? The solution might be staring you in the face, says Beth Zaharoff, director of patient-focused trial engagement at TESARO.
“Listen to your trial participants,” she told attendees of the Clinical Trial Collaborations conference in Cambridge, Mass., on April 10. “Never assume you know what patients want.”
There are a number of potential benefits for sponsors, including:
- Improvements in feasibility, so that the protocol is simpler to administer and to complete for the patient.
- Enhancing convenience, so that it is easier for patients to remain in the study.
- Creating greater relevance by using the patient community input to identify and study the highest priory unmet need.
- Building patient ownership and commitment to the program’s success.
TESARO leveraged focus groups to help it determine what patients thought about the clinical trial experience, and how it might be improved.
The Patient Voice: Improving Patient Experience by Understanding Patient Perspective – 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. Join us at ACRP to 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. View Session Details
Time is Running Out! ACRP 2018 Just a Few Weeks Away! Register Now
The initial results “made me sad,” Zaharoff said. Among the discouraging findings, patients were confused by informed consent documents and felt underappreciated and ill-treated.
Armed with this information, TESARO took a number of concrete steps, including:
- Giving patients a folder and a thank you letter from the chief medical officer at their very first trial visit. The letter made it clear how important their participation was, and how much their work was appreciated.
- Providing a single-page study summary for participants. It spelled out, in simple language, what tasks would be performed that day and the amount of time each event would take.
- Producing a bi-annual newsletter for participants.
- Adding a clinical trial FAQ to the company’s website and providing an end-of-study questionnaire.
However, it’s also important not to overpromise, Zaharoff said. “We promised we would seriously consider every comment” the patients made, she noted, but also explained that there might be reasons—such as regulatory or legal constraints—that made it impossible for the sponsor to comply in some situations.
Author: Michael Causey