A formal thank you provided to clinical trial participants are one way to recognize their contribution to research and to the generation of new knowledge. This contribution may include their time, their health information, their biological samples, and more.
“Clinical trials depend on the willingness of participants, some of whom are critically ill. They all deserve a thank you. They rightly expect much more.” [Editorial. 2018. Nature, 563, 293-294]
Some things to be considered when planning, creating and providing a thank you document:
Content and 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
- Work with patients and caregivers to develop a thank you template and approach. CTO has resources to help you engage patients and caregivers here.
- 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
These resources are provided to help with developing thank you’s for clinical trial participants. In addition to the resource name, the organization that developed the resources is listed and a brief description is also provided.
- Thank You Template – Clinical Trials Ontario and Clinical Trials BC – A template with helpful instructions and suggested wording which is intended to be “plug and play” and easily branded by your organization.
- “Thank You” Letter at Participant Completion of Clinical Study – Transcelerate Biopharma – A template to help the creation of an end of clinical trial thank you for trial participants (before a publication on the study is available).
- Feedback and Appreciation Samples – University of Waterloo Research Ethics – Templates are provided as examples to consider for thanking research participants.
- Writing a ‘thank you’ note is more powerful than we realize, study shows – Science Daily – Brief article that summarizes a psychological study behind the power of thank you.
- Best Practice Recommendations for Communicating Results to Clinical Trial Research Participants – Clinical Trials BC – provides practical advice on communication practices recommended for improving the experiences of participants taking part in clinical trials
Note: This resource list is not exhaustive and listing a resource does not denote its endorsement or promotion.