Through including the voice of patients and the public, the ReIMAGINE Consortuim aims to translate different patient perspectives into the design and implementation process. This will improve the overall quality of the research by:
- reflecting the needs and priorities of patients and the public, ensuring methods and procedures are feasible and appropriate
- ensuring information is relevant and accessible to those being recruited to the study
- identifying dissemination channels relevant to patients/the public and developing outputs that are accessible to a lay audience
We have been working with patients and the public from initiation of the project to ensure that the research is relevant to men and their families. The grant application was developed with both patient and public involvement. During the grant writing/planning phase, we used a three-stage approach (i.e. information session, discussion groups, and feedback presentation), whereby we interacted with patients, their families, as well as men from the general population to develop an active partnership between patients and researchers.
The PPI Sub-Committee meets consistently every three months to ensure that the needs and priorities of participants are reflected as well as to ensure information is relevant and accessible to those being recruited and the public. The committee consists of two white men and one black man with prostate cancer as well as one black woman (whose father died of prostate cancer) - between the ages of 40-80 years old, with varying educational qualifications. The diversity of the group has permitted a greater range of perspectives from different age groups and communities to help shape the research. The committee have reviewed all patient facing documents (e.g. patient information sheet, consent form etc.), developed the patient area on the ReIMAGINE website, advising on design, layout and content, along with the six-monthly newsletter. They created the storyboard and scripts for the patient information videos on the website by working closely with the PPI Coordinator and ecancer. The sub-committee have developed multiple online research engagement events that are accessible to a lay audience. In addition, to further engage the prostate cancer community outside of London, we worked in partnership with charities and patient groups nationwide to promote our free webinar series.
The consortium has incorporated structures and funding for inclusion and engagement of the patient and public voice in the study design, monitoring and ongoing processes, resulting in a more effective and improved research process. The development of robust PPIE structures and processes that are embedded in the whole research process ensures that encountered challenges can be overcome.