I am pleased to note that "patient and public involvement (PPI)" is mentioned frequently in the UK. It seems to be the acronym that has grown from the phrase that I heard frequently during my last visit to the UK: "nothing about us without us".
Here is an example of PPI from the Accelerated Access Collaborative (AAC) in the NHS: https://www.england.nhs.uk/aac/what-we-do/patient-and-public-involvement/
"Patient and public involvement is important to the work of the Accelerated Access Collaborative (AAC). We work with people and communities to ensure that the research priorities and innovations we support are developed in collaboration with people with lived experience of a particular service or health condition. We work with patients, people who access services, carers, charities, community groups and others to bring diverse perspectives into our work."Here is the NHS PPI strategy: https://www.england.nhs.uk/aac/publication/accelerated-access-collaborative-patient-and-public-involvement-strategy/
"Working with our patient partners and stakeholders, we have developed The patient and public involvement strategy 2021-2026. This strategy sets out six aims:
- Ensure that a diverse range of patients and the public, especially people with lived experience, are involved in influencing the direction and delivery of our work programmes.
- Proactively address equality and inclusion in our work.
- Work collaboratively across the Accelerated Access Collaborative (AAC) partnership and wider system partners to embed a culture of patient involvement across AAC programmes.
- Support patients and public partners to have a meaningful and positive experience while working with us.
- Understand our impact and outcomes.
- Communicate our impact."
I have learned from Prof Yvonne Wren about how they have PPI groups (e.g., YPAG - Young People's Advisory Group) who are consulted at various times during their research. For example, their team included a range of stakeholders to co-design in their research, then the PPI groups were consulted to provide feedback before being tested.
PPI groups can be established outside of the data collection process. PPI discussions are not included as research data unless ethics approval has been gained and signed consent has been received.
Here are some associated terms: "co-design", "co-create", "collaboration", "listening to children's voices".
