Patient and public involvement and engagement (PPIE)
The involvement and engagement of patients and the wider public is crucial to the development and successful operation of the DEC. By working together it will help us to design better informed research studies which will result in the generation of more useful and applicable evidence to bring more IVDs into use.
Involving patients and public during the development stages of studies will enable us to develop innovative approaches, as well as better informed and more effective studies. Patients and public can also help inform how we conduct a particular procedure. We will also involve patients and public as part of applications for funding and subsequently to assist with the dissemination of research study findings.
See an example of how we have been working with representatives from Voice North to inform the work of the DEC.
Voice North has produced a useful guide on how to write a lay summary
Obtaining evidence to demonstrate the benefit of IVDs will require the recruitment of patient volunteers. Besides providing data on the clinical validity of tests, patients also provide valuable information on the acceptability of tests, e.g. factors such as discomfort, reduction in anxiety etc.
We will also undertake activities to engage with the wider community to inform them of the research we are undertaking in collaboration with IVD developers. This will be done by producing case studies, lay summaries of the results of studies, and hosting events - for example as part of the Research Matters series.