What is Patient and Public Involvement (PPI)?
- 'Patient and public' means everyone who uses healthcare services at present, or may do so in the future, carers, and people from organisations that represent people who use services.
- Patient and public involvement (PPI) occurs when patients and the public work in partnership with researchers to set priorities for studies, plan and manage activities and put results into practice. In this way, it is different from research in which people are participants, reporting their own experiences in a survey for example.
- Public engagement refers a two-way process in which researchers connect, listen and interact with the public on a general level, 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 important. To facilitate this, YHHH has a Patient Partnership, made up of hundreds of people (patients and relatives) 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 generally meets once or twice a year and discusses projects and any concerns raised as a result of the 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 our study paperwork, including information leaflets and newsletters.
Looking more broadly than PPI, we are keen that people in the YHHN area (patients and relatives) are also able to participate 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, you will be sent or given a YHHN information leaflet and consent form by a member of your clinical team, with one of the questions requesting future contact, should further research be considered. People agreeing to this 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. As new studies are built into YHHN, members of the Partnership are invited to take part in additional activities, including 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 newsletters
- Research summaries published on this site
- Study findings published on the Haematological Malignancy Research Network website
- Charity partner blogs and publications (e.g. Marie Curie; Lymphoma Action, BCUK)
- Patient conferences and Open Days
- All our study material contains a Freephone number (0800 328 0655), and we would encourage anyone who wants to engage further to contact us using this number to discuss future opportunities.