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This article overviews the background and importance of public involvement in cardiovascular research. It also provides a useful framework and helpful resources for researchers to use in practice.
Where does public involvement come from?
The philosophical roots of public involvement are in the concept of citizen ‘conscientisation’ introduced by the educator Paolo Friere, and theories of power and knowledge as social constructs from Michel Foucault. Within liberal democracies, citizenship refers to a legal responsibility, and to active participation. Thus, public involvement can be seen as transformative process whereby society and the public can be empowered.
The UK led the way globally with investment and national commitment to public involvement. The National Institute for Healthcare Research (NIHR) INVOLVE organisation was born in 1996 to support active public involvement in the National Health Service (NHS), public health and social care research. ‘No decision about me, without me’ was central to the UK Government’s 2010 White Paper, Equity and excellence: liberating the NHS and became the mantra for shared decision-making.
The profile and impact of public involvement in low-income and middle-income countries are growing, and public involvement has a role in addressing global inequity in health research. The International Patient and Public Involvement Network was born in 2018 from a Cochrane collaboration and currently has representation from 57 countries.
What is public involvement?
The most practicable definition of public involvement comes from INVOLVE, which states that public involvement in research is to carry out research ‘with’ or ‘by’ members of the public rather …
Contributors AR and MM contributed equally to this manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
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