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Abstract
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As an early career researcher, public and community involvement and engagement (PCIE) has been high on my list of priorities when planning research projects and applying for research funding. The National Institute of Health Research (NIHR) strongly advocate public involvement in research. They promote that research should be carried out 'with' or 'by' members of the public, rather than 'to', 'about' or 'for' them (NIHR, 2021). Whilst 'nothing about us without us' is not a new call to action, in recent years it has certainly gained more traction with child health and social care researchers.
It is widely acknowledged that children and families with lived experience of a particular condition are the best placed to advise on what support and services make the most positive difference to their lives (National Quality Board, 2022; NHS England, 2022). It is also accepted that involving children and their families in research helps to ensure that projects are relevant, that they are delivered in an effective, efficient, and acceptable manner and that findings have the greatest chance of driving meaningful change (Crocker et al., 2018; Crockett et al., 2024; Hoekstra et al., 2020). In addition, when done well, PCIE is consistently reported to contribute to improved patient- and family-centred care (Health Research Authority/INVOLVE, 2016). This includes improving patient experience of care, improving outcomes for patients and their families and even reducing per capita cost of healthcare (Buchanan et al., 2022).
It is suggested that PCIE can also facilitate democratisation of research, making research more open and accessible to everyone, particularly to the children and families it involves (Boaz et al., 2016). This calls researchers to offer greater transparency and accountability in the research process, demystifying often inaccessible research practices, and ensuring children and families have agency and appropriate resources to understand and influence research. This is of particular importance in countries and/or organisations where research funded through public money (Morris et al., 2011; Thompson et al., 2009).
Due to the methodological, ethical and political drivers described, involving people with lived experience in research has become increasingly valorised by research funding bodies and by national research organisations (Canadian Institute of Health Research, 2018; NIHR, 2021; Patient Centred Outcomes Research Institute, 2024). In the United Kingdom, Canada, the United States and Australia, PCIE has become a prerequisite for research grant applications (Gibson, 2017), with public or community members often key personnel on funding review panels (NIHR, 2021). In the United Kingdom in particular, research ethics and governance gatekeepers now mandate that public and community partners are involved at each stage of the research process and, if they are not, researchers should provide robust justification for their omission (Health Research Authority/INVOLVE, 2016).
The growing political currency of lived experience and PCIE in research practice has led to a call for
Language: en |