“No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.” Professor Dame Sally Davies (Foreword in Staley 2009)
Patient and public involvement (PPI) in research is now a well-accepted concept and, although barriers still exist, it is increasingly embedded into the work of of key organisations, such as INVOLVE, SPOR, PCORI and the NCRI. Defined as research ‘by’ and ‘with’ – rather than ‘about’, ‘to’ or ‘for’ – patients, carers and the public, it emphasises working with patients and the public to make sure that what is being done is relevant to their needs, appropriate and effective, and ensures the research is asking the right questions and using the right processes.
However, while there has been a rapid accumulation of evidence regarding its worth in recent years, this evidence remains limited. Many methods are described in the literature with reported success, but most do not provide enough information to replicate the method elsewhere, with little-to-no critical evaluation of whether it was done well.
Indeed, a recent systematic review found no comparative analytic studies to provide evidence supporting a particular method. Even in those few cases where the impact of PPI is measured, this is generally done from a research conduct perspective. Studies tend to look at its influence on recruitment and retention rates for example, rather than on the validity of the findings, with no consideration to the generalizability of the method, or its transferability to other settings.
To further compound these issues, what limited evidence is published is often not available in the public domain. Articles are locked behind paywalls, and spread between many different journals and media, making them inaccessible to the very people who are most concerned with what they have to say. Finding published information regarding the impact of methods for PPI can be like looking for a needle in a haystack.
We believe that if PPI is to progress, it needs to be given the same considerations that are applied to other aspects of research methodology. It is due to this, that I am delighted to announce our new, innovative open access journal on PPI in research – Research Involvement and Engagement.
The world’s first co-produced medical research journal
Research Involvement and Engagement (RIE) is an interdisciplinary, health and social care journal focusing on patient and wider public involvement and engagement in research, at all stages. However, right from the start, we are setting out to practice what we preach, and the journal will have a novel structure, co-produced by all key stakeholders, including patients, academics, policy makers and service users.
The journal will be led by co-Editors-in-Chief Sophie Staniszewska, PPI lead at the Royal College of Nursing Research Institute at Warwick Medical School, and Richard Stephens, an involved and engaged patient and carer from the UK. The Editorial Board who govern the strategy and development of the journal is equally representative of all key groups.
Unlike traditional academic journals, all articles within RIE will be reviewed by at least one academic and one patient reviewer. Due to the subject area of the journal, the patient reviewers will be viewed as subject-area experts, with both reports carrying equal weight in the editorial decision.
We are aware that patients and the public do not have the same advantages that academics receive when reviewing articles; therefore, we are looking to give some of these advantages to our lay reviewers as well, including a structured reviewer form, designed specifically for evaluating PPI in research. We will also be providing access to training and materials to help with reviewing articles; support and feedback for any articles you may want to write or submit; and waiver of publication costs for articles submitted to RIE.
We want to develop our understanding of the concept, theory and methods of involvement and engagement in research. This new journal gives us the opportunity to highlight good examples of PPI and benchmark standards, to encourage innovation and allow for comparisons between different methods.
Sophie and Richard said: “Research Involvement and Engagement aims to develop the evidence-base underpinning patient and public involvement and engagement in health research. Our joint editorship is a genuine collaboration between a patient and an academic, and signals our intention to work towards the co-production of knowledge that informs health care practice. We want to walk the walk as well as talk the talk, and we look forward to you joining us as fellow travellers on our journey, and as fellow contributors in this new journal.”
This is a very exciting time for PPI, and we are trying to achieve something that has never been done before, so we are looking for your help to make it work. We need your feedback and support – get involved as a reviewer or an author, tell us what you think, and spread the word. With your help, we can make this journal a success and drive and encourage co-production of knowledge across all health and social care.