Involving patients and the public for better evidence synthesis
Public and patient involvement (PPI) is often a requirement of research funders; however, this should not be the only reason for involving public and patient groups in research. Involving people with personal experience of the disease, intervention or treatment of interest can help identify new review topics. It can also help researchers choose more relevant outcomes; enable transparency; improve understandability of the research for lay people; and it can enable wider dissemination of the research. One of the challenges associated with PPI can be finding individuals who are willing to partake. Incentivising PPI colleagues without creating conflicts of interest can also be an issue.
In November 2018, Joanna Furnival-Adams from the CIDG base attended a workshop on Public & patient involvement (PPI) in evidence synthesis, run by the Liverpool Evidence Synthesis Network (LivEN).
The workshop shed light on how the involvement of public and patient groups can add value to research at various stages. The event attracted a diverse group of speakers and attendees, representing perspectives from patients, researchers and science journalists, which allowed for interesting discussion around the role of PPI in research.
A highlight of the workshop was hearing the experiences of PPI colleagues, Saiqa Ahmed and Naheed Tahir, who have represented the views of patient groups in systematic reviews on cancer screening amongst ethnic minorities. It was inspiring to see how their participation built dialogue between patients and researchers and empowered them, giving them a platform to voice their and their peer group’s views.
Overall, the workshop was extremely thought-provoking and highlighted the importance of PPI in all research.
The CIDG editorial base is located at the Liverpool School of Tropical Medicine in Liverpool, UK. The CIDG is led by Professor Paul Garner (Co-ordinating Editor) and Deirdre Walshe (Managing Editor). Over 600 authors from some 52 countries contribute to the preparation of the Cochrane Reviews. They are supported by an international team of Editors, each with topic or methodological expertise.
The CIDG’s main areas of work are on determination of the effects of interventions on the prevention or treatment infectious diseases of relevance to the United Nations Sustainable Development Goals, particularly malaria, tuberculosis, HIV/AIDS, and neglected tropical diseases. The aims of the CIDG are to impact on policy and research in tropical diseases through the production of high quality and relevant systematic reviews, and to lead developments in review quality improvement and effective dissemination of findings.