During the sixth session of the Patient Cafe™, participants were asked, “How could patients help in clinical trial design?” The discussion centered around making the clinical trial enrollment process and participation more transparent and easy-to-understand. Some takeaways from this great discussion:
- The informed consent documents need to be shortened and clarified, with language that the average patient can understand.
- Clinical trial sponsors need to be more understanding of patients’ schedules and commitments when asking for tests and appointments. Patients should be made aware of what tests are required before the trial begins.
- Logistics should be considered and discussed at the outset of the trial.
- Tests and drugs should be paid for by clinical trial sponsors. When patients are told that a test is needed for the trial, but the cost is the patient’s responsibility, they feel that they are just being “used” for the trial.