What is Patient and Public Involvement (PPI)?
- Involvement is research carried out 'with', or 'by' the public, rather than 'to', 'about' or 'for' them, and includes everyone who uses healthcare services, including patients, future patients, carers, and organisations that represent people who use services.
- PPI occurs when patients and the public work in partnership with researchers to set study priorities, design, plan and manage the work and put the results into practice with a view to improving healthcare. It differs from studies that include people as research subjects - e.g., completing a survey.
- Engagement refers a two-way process in which researchers, patients and the public connect, listen and interact, discussing ideas for future studies and sharing findings.
Patient Partnership
PPI and engagement is at the heart of YHHN and ensures all our activities focus on issues patients and the public think are relevant and important. To facilitate this, YHHN has a Patient Partnership, made up of hundreds of patients who agreed we could contact them for future research purposes. This group is overseen by a committee (patients, carers, specialist nurses, researchers) and monitors all activities involving patients. It meets once or twice a year and discusses projects and any concerns arising from research activities.
Regarding PPI, patients and relatives from the Partnership are invited to collaborate with YHHN researchers on all funding applications, as equal partners. Patients and relatives help shape our questions, monitor study progress and share our findings; they also check and amend study paperwork, such as information leaflets and newsletters.
Looking more broadly than PPI, we are keen that patients and relatives in the YHHN area are able to take part in our studies by telling us about their own experiences. We enable them to do this by inviting members of the Partnership to complete questionnaires for us, and to take part in discussion groups.
How to get involved
Soon after diagnosis, patients receive a YHHN information leaflet and consent form on behalf of their clinical team. People agreeing to further contact are automatically considered part of the Patient Partnership, and may be asked to take part in PPI activities. They are also asked to complete a questionnaire about their background, current illness and quality of life and may be sent further questionnaires about quality of life, so changes over time can be monitored. Members of the Partnership are invited to take part in new studies that are routinely set within YHHN - e.g., surveys, interviews and/or group discussions.
Engagement with patients, families/carers and the public
YHHN engages with patients, families/carers and the public in a number of ways, including:
YHHN's study material contains a Freephone number (0800 328 0655), and anyone wanting to engage further should contact us on this number to discuss future opportunities.