Participant Experience Toolkit

Content & Format

• Keep it simple, short, and to the point
• Ensure the title of the study is on the thank you document
• Consider different approaches and formats for different participants:
• For example, pediatric participants may be provided with a ‘tangible’ thank you (e.g. a clinical trial ‘bead’) instead of a written or printed document
• Formats may include a printout, an email, a phone call, or even a short video (ensure videos are accessible with closed captions)
• Translating the thank you document into a participant’s own language if possible will make it more accessible and personalized.
• If caregivers of participants are critical to helping them participate in the trial, develop a similar thank you document for caregivers
• Find ways to personalize the thank you (e.g., sign the thank you by hand from the investigator and clinical trials team). You may also wish to add something personal about the individual’s contribution, such as how many site visits they attended, how many samples they provided, how many times they filled out questionnaires, an estimate of the number of hours they provided to participate, etc.).
• Ensure the thank you document is approved by a Research Ethics Board

Process

• Work with patients and caregivers to develop a thank you template and approach. CTO has resources to help you engage patients and caregivers.
• Consider the timing of thanking participants, for example: at study visits (indicating the number of study visits they have completed to date), at the end of the clinical trial, or when someone withdraws from the clinical trial. For studies that are done over a long period of time, consider thanking participants on a regular basis (for example, every 6 months or every year). Consult a research ethics colleague if you feel advice on timing from their perspective would be helpful.
• Ensure the process of providing it to participants is approved by a Research Ethics Board