PE & PPI Flashcards
What is public engagement?
- PE is public dissemination of research
- PE is about science communication (raising awareness of research)
- One-way communication (researchers to public)
- PE communication should differ depending on target audience
What is public and patient involvement?
- PPI is engaging the public and patients to give feedback and their perspectives to shape how research takes place
- Actively involving people in making decisions about what research is done and how it is done
- Two-way communication
- Partner with researchers & have members of the public as co-researchers
- PPI is doing research with or by members of the public, instead of ‘to’, ‘about’ or ‘for’ them
- Not about public being subjects of trials
Who are the public?
Civil society, policy makers, business, public sector
When does PE tend to take place?
Once the project is complete
Examples of PE
- Disseminating results via publications, traditional media, festivals…
- Information evenings
- Social media
- Newsletters
- Blog posts
- Videos and podcasts
- Link with other events
What is the point of PE?
- Relevance
- Teaching & research in line with needs of society
- Innovation
- Increase accessibility of science & encourage people to get into the area - Accountability & trust between universities and the public
- Duty and responsibility
- Improve public perceptions of research institutions i.e. universities
- Engaging with the public improves research - Research funders expect it
How can PPI improve research?
increases relevance, acceptability & accessibility
“Nothing about us without us”
History of patient advocacy e.g. disability, cancer, HIV/AIDS
- Citizens have the right to influence research funded by public money (HRB, Irish Research Council etc.)
Examples of PPI
- Community advisory boards: asking members of public to help co-design interventions, help set priorities, user-testing of services
- Conceptual theories:
- Arnstein’s seminal work (1969)
- Hart’s ladder of young people’s participation
- Lundy’s model for young people’s involvement in research
- Co-design spectrum (IAP2) of public participation
When is PPI ideally embedded in the process?
From the start - incorporate patient voices from step one
What is a PSP? Give an example
Priority Setting Partnership
E.g. James Lind Alliance
- Connects researchers, clinicians and patients
i.e. Diabetes and Pregnancy Priority Setting Partnership
- JLA in the UK
- Initial survey where women & support networks could submit their unanswered Qs (450 people)
- Compiled these Qs & answered them - refined these again and again to 10 research priorities
Give an example of user-led research
Kahnawake Schools Diabetes Prevention Project
- Had 2x national average of diabetes
- Designed projects targeting school children, became more involved, took 7 yrs but got funding
- Community advisory board set up, huge focus on PE & community involvement
True or False: A small amount of good-quality PPI is better than a lot of poor-quality PPI
True
Is disseminating research to stakeholders PE or PPI?
PE
Is review of funding applications by patient/public rep PPI?
Yes
