Patients and public encompass a large group of people. They can be patients, potential patients, carers, generally anyone who uses or may use health and social care services, or organisations supporting and/or representing such users, as well as any interested member of the general public.
Involvement is about ensuring patients and the public are involved in all aspects of the research process, from design through to conduct and dissemination. It should reflect the ‘Nothing about me, without me’ ethos of the Health Research Authority (HRA), the NHS and many PPI groups. Research should be done ‘with or by’ the public not ‘to, for or about’ them.
Engagement is ways in which the research team share details of their work with patients and the public. However, engagement is not just researchers providing information to patients and the public, it is also providing the opportunity for a two-way discussion. For researchers to listen and interact with these important stakeholders.
Here in THT/PSH patients are at the heart of what we are doing. Our research is focused to provide better diagnostic and care options for future healthcare practice. Therefore, it is important that PPIE representatives are involved from the start. In our projects we aim to incorporate PPIE in all elements of our research activities from design through to conduct and dissemination.
We have strong links with a number of PPI groups including ICU Steps and Breathtakers. We see our Patient Representatives as colleagues and collaborators when it come to our research, we have already named some of our PPI representatives as co-applicants in a number of our projects.
We believe our approach to PPIE shows a commitment to prioritising patient and public benefit as one of our core cultures and values within the group.