Patient and public involvement

[5][6] The National Institute for Health and Care Research (NIHR) uses the term public partnerships to encompass the components of involvement, engagement and participation.

Public contributors can also ensure that the research is presented in plain language that is clear to the wider society and the specific groups it is most relevant for.

For example public members can help participants of a clinical trial understand what the research is about so they can make informed consent have an overall better experience.

[8] These can include altruistic motivations, such as wanting to make a difference by contributing to a better healthcare or helping others with a shared condition get better care and treatments.

The standards provide a description of what good public involvement looks like and can be used as a tool to help people and organisations improve their PPI.

[18] Academic journals continue to develop ways to ensure patient involvement is reported transparently and meaningfully.

Potential difficulties for patients might arise from health status, accessibility of locations, self-confidence, language proficiency and available free time.

[9] Power imbalances between people, hierarchical or elitist attitudes by medical professionals can also impair the experience and quality of patient involvement.

[23] Despite evidence that public involvement can have a positive influence on health research, evaluation of its impact has been reported to be anecdotal and weak.

[31] EUPATI's publications include guidance documents on patient involvement in medical product regulation, ethical reviews of trials, research and development, and health technology assessment.

[32] In the UK, patient and public involvement is acknowledged in key pieces of legislation on healthcare such as the Health and Social Care Act and the NHS Constitution.

[35] The NIHR also funds the James Lind Alliance, an organisation that brings together patients, carers and clinicians to identify unanswered questions or uncertainties for future research to look at.

Global health research often takes place in low and middle income countries (LMICs) and concerns marginalised communities.

Involving these groups in research can reduce the potential for exploitation, address ethical concerns and bridge cultural differences.

[46] A 2021 survey highlights that the majority of public contributors to NIHR research were predominantly female (57%), 61 years of age and over, white and heterosexual.

[49] The Race Equality Framework (REF) was produced as a self assessment tool aiming to help organisations improve racial equity in health and care research.

[53] The development of patient and public involvement in research was influenced by grassroots social movements, national politics and wider societal contexts.

[60] This has led to calls to look beyond mere involvement or engagement and to lived experience leadership in which decision-making power sits with patients.