Participant Experience Toolkit

Process

• Depending on the study, more surveys may be a burden to
  Minimize the time required to complete a survey and see if the logistics related to completing surveys in stages is possible. A survey should take no more than 5-10 minutes to complete.
• The survey should be available to the participant to complete at a convenient time. For example, during a wait for study visits or tests.
• Implementation of digital surveys may cause issues for participants without access to technology or who have issues with technology. If someone does not have access to technology, a paper survey, or the option to complete the survey on a device at a site visit may be options.
• An alternative to a survey may be a review meeting (pre, mid, and post-study) with a trial team member, keeping in mind the relationship of the participant to that trial team member and the potential for complete or honest feedback.

Timing & Frequency

• A pre-study survey may be helpful to identify participant needs and expectations before the trial begins.

Follow-Up To Survey Feedback

• Determine how feedback from surveys will be used to improve the participant experience in the clinical trial and ensure that there is a plan for a timely response and implementation of feedback.

Additional Considerations

• Individual, identifiable feedback should be collected by the trial team. Unidentified, aggregate feedback should be provided to the sponsor. Anonymous feedback should be the default unless there is a desire by the participant to allow provision of contact information for follow-up on any concerns.
• Ensure that the Research Ethics Board has reviewed the survey tool and plan for implementation of the survey.