Patient, public and community involvement and engagement (PPIE) has become a key part of health and social care research, with a focus on working ‘with’ or ‘by’ patients rather than ‘to’ ‘about’ or ‘for’ them, and aiming to co-produce knowledge that is relevant, appropriate and acceptable for patients. However, researchers continue to routinely omit the reporting of PPIE in academic papers. This represents a form of research waste – valuable contributions are made but remain invisible, limiting learning and weakening the evidence-base. While this may seem obvious, the reporting of PPI in research remains more elusive than we might expect.
Poor PPIE reporting has serious implications – patient’s contributions to a study are not publicly acknowledged; clinicians cannot judge whether outcomes reflect patient priorities; and researchers struggle to synthesise good practice. Funders and policy-makers lose critical insight into whether research is inclusive and patient-centred.
ARC WM developed international reporting guidance to enhance the content and quality of PPIE reporting in academic research papers. This started with the publication of GRIPP2, which guides researchers to report their public involvement in a paper, followed by checklists focused on specific methods that include items on PPIE, including CHEERS 2022 for health economic evaluation, CONSORT for clinical trials, and SPIRIT for clinical trial protocols. These will help ensure that PPIE is recognised as an essential part of research design and reporting. In addition, we are developing reporting guidance for the economic aspects of systematic reviews and expect PRISMA EE to include an item on PPIE reporting.
GRIPP2 is recommended by NIHR and widely cited internationally, with over 100 citations where researchers are either actively using it or referring to it. CHEERS 2022 is rapidly picking up citations and is now the norm for reporting health economic evaluation internationally. These tools elevate the patient voice in academic research, normalise PPIE as standard practice, and build an evidence-base that informs better care. In the long term, this will lead to more relevant, acceptable research that is easier to implement because patients have shaped it from the outset
