Just learned of a systemic effort by the (UK) National Health Service to support public involvement in research:
https://www.hra.nhs.uk/planning-and-improving-research/best-practice/public-involvement/
Four principles for meaningful involvement of patients and the public in health and social care research:
- Principle 1: Involve the right people
- Principle 2: Involve enough people
- Principle 3: Involve those people enough
- Principle 4: Describe how it helps
Who are the right people?
People with relevant lived experience of the health condition or social care situation being researched.
Usually this means people who have experienced it directly, such as patients and service users, but it may also mean carers of people with direct experience.
In research which involves healthy volunteers, working with members of the public may be appropriate.
It is important to work with people whose lived experience means they are likely to have a good idea of what will be acceptable to potential participants.
People's experience of a health condition or social care situation never happens in isolation from the rest of their lives; consider the other valuable experiences and skills that people have which may be relevant and important for your research.
Use our resources page for advice on the practicalities of finding the right people to involve in your research, and for examples of how other researchers have approached this.
More on the links above. Looks like a good effort towards systemic change - from which we have much to learn!
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Lloyd Michener, MD
Professor Emeritus, Department of Family Medicine & Community Health, Duke School of Medicine
Adjunct Professor, Public Health Leadership, UNC Gillings School of Global Public Health
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