What do we mean by patient and public involvement?
Patient and public involvement refers to patients, service users, carers, families, people with lived experience of health conditions (who may or may not be current patients), patient advocacy organisations, and members of the public. We aim to work in partnership with representatives in the planning, designing dissemination and translation of clinical audit and research.1
The widely used definition of Patient and Public Involvement in research is: ‘--- research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’.2
1. Guide to Patient & Public Involvement in HSE research
2. Public & Patient involvement in Research (PPI) HSE Research & Development
Involvement, Engagement, & Participation.
Involvement can include people getting involved in these ways:
- Members of a project steering, governance group
- Setting audit and research priorities
- Provide feedback on reports and other relevant materials
- Advising and developing patient information leaflets or other relevant research/audit materials
- Presenting at the NPEC study day
- Co-applicants for funding for a research project
Engagement is about awareness raising, sharing, disseminating knowledge about the work of the NPEC, including its research and audits.
This also relates to engaging patients, service users, carers, families using health and social care services, people with lived experience of health conditions (who may or may not be current patients), patient advocacy organisations, and members of the public in a conversation about research and clinical audit. This might be through:
- NPEC Study Day
- Research open days or dissemination events
- Through the media and social media
Participation refers to when people take part in a research study (clinical audit) as participants.
This might be a clinical trial, taking part in an interview or focus group or online activity. Usually, it involves people consenting to take part and have their data collected so that researchers can answer a particular research question.3
3. Adapted from Patient and Public Involvement in HSE research Knowledge Translation, Dissemination, and Impact A Practical Guide for Researchers
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