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Partnering with Patients: The Vital Role of the Patient Voice in Clinical Trial Design
- Redesign of Patient Information Leaflet gets patients stamp of approval
- Change of format without changing content proves more user friendly
Clinical trials play a crucial role in advancing cancer treatment and post-treatment care, but ensuring participation can be challenging for complex reasons. Overcoming barriers like language barriers, trial design issues, and addressing misconceptions about medical research is vital for increasing patient enrolment. Patient information leaflets are key to the informed consent process and recruitment; however, they are traditionally written by academics and clinical researchers.
Research Dietitian Ms Katie Johnston and Ms Katarina Medved from the Irish Cancer Society funded LIAM Mc Trial research team collaborated with patients to optimize the format of a Patient Information Leaflet (PIL) used in the trial. By collaborating with patient and public contributors throughout the design process, they worked to create informative, accessible and user-friendly leaflets. Their partnership with patient contributors has been published today in the Irish Medical Journal.
Utilising the established patient and public involvement (PPI) panel in the UCC Cancer Trials Group, Johnston and Medved aimed to investigate patients’ opinion on the navigation and accessibility of a standard A4 patient information leaflet format compared to a newly redesigned A5 booklet format. A key aspect to this project was that the written information in the PIL did not change across the different formats. By solely changing the format, the PIL became more accessible to patient.
“Patient voices are key to quality research. By partnering with patient and public contributors in clinical trial design, it broadens our perspective and works to bridge the gap between researchers and patients.” says Katie Johnston, the research dietitian who led out on the project.
The newly designed PIL has been approved by the Clinical Research Ethics Committee of University Teaching Hospitals. It is being used in the Irish Cancer Society funded LIAM Mc Trial, a 12-week multi-disciplinary interventional programme for men impacted by metastatic genitourinary cancer, based in the Mardyke Arena. The collaboration with a PPI panel has led to further work being done to ensure the language used in PILs is accessible through the Patient-Focused Quality Working Group.