Rationale
TransCelerate’s Patient Experience initiative tools are intended to provide more effective ways to engage with patients and caregivers in the design and execution of clinical studies.
The Patient Protocol Engagement Toolkit (P-PET) facilitates the design of clinical studies with patient and caregiver inputs.
The Study Participant Feedback Questionnaire (SPFQ) Toolkit is a set of questionnaires administered at the beginning, during and end of the study to improve studies by learning from patients.
Benefits
Benefits for Patients:
- Increased engagement through better communication and feedback processes
- Increased understanding of the value in participating in clinical trials
- Potential increase in the sense of altruism due to the confidence of knowing that their participation and feedback in trials may improve future study volunteers’ experiences
- Potential decrease in the burden of participating in clinical trials
Benefits for Sponsors, Sites and Investigators:
- Potential improvement in patient recruitment, retention, and adherence within clinical trials
- Potential reduction in long term costs through more effective patient engagement
Available Solutions
The following assets are now available:
Patient Protocol Engagement Toolkit (P-PET): The P-PET provides tools and resources to use in engaging patient advisors and caregivers during protocol development with the goal to improve patient experience and reduce patient burden as a study participant. The P-PET can be utilized by sponsors to partner with patient advisors and caregivers in creating patient-centric clinical studies. The toolkit was updated in 2021 due to the shifting environment posed by COVID-19. New considerations for caregivers and best practices for engaging patients in a virtual environment have been added.
Study Participant Feedback Questionnaire Toolkit (SPFQ): The SPFQ is a questionnaire for patients at the beginning, middle and end of a clinical study. The questionnaire results will help sponsors learn from patients so that they may improve trials.