Key Resources


Currently, there is no method to measure the patient experience in clinical trials, and sponsor companies do not have available to them any examples or models for translating patient engagement into actionable insights that could help improve clinical trial design and trial execution ultimately to achieve a better patient experience. The Patient Experience Initiative is in the process of developing tools for clinical teams to engage patients in the study design and execution stages of clinical trials and increase the patient centricity of study programs. Ultimately, these tools will enable greater patient engagement and partnership with sponsors to design and execute clinical protocols that create better patient experiences in clinical trials.


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 Assets

The following assets will be delivered by this initiative in Q3-2019:

Patient Protocol Engagement Toolkit (P -PET): The P-PET provides tools and resources to use in engaging patient advisors 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 in creating patient-centric clinical studies.

Study Participant Feedback Questionnaire (SPFQ) ToolkitThe 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.

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