New guidance for reporting patient and public involvement in research

There is growing evidence for the benefits of patient and public involvement and engagement within research to ensure it’s asking the right questions and is usable in practice. However, when it comes to its reporting, it is often less than adequate. Here, co-Editors-in-Chief of Research Involvement and Engagement, Sophie Staniszewska and Richard Stephens, discuss the first international guidance for reporting patient and public involvement in research, co-published today in Research Involvement and Engagement and The BMJ.

Patient and public involvement and engagement in research is increasingly being recognized for the particular insight it can bring to research. By conducting research with those who will be affected by the outcomes, you ensure the research is asking the right questions that the patients or public want answered, that the study (if a clinical one) is more likely to recruit to time and target, that research in general will become more understood and supported by the public, and that the outcomes themselves will work in the real-world.

Today is a notable day for this field. As co-Editors-in-Chief of Research Involvement and Engagement, we are pleased to highlight the first international guidance for reporting patient and public involvement (PPI) in research, co-published today in Research Involvement and Engagement and The BMJ (Sophie Staniszewska is also lead author on the paper).

This reporting guidance, known as GRIPP2 (Guidance for Reporting Involvement of Patients and Public) represents many years of effort, which have included a number of systematic reviews that identified the often inconsistent reporting in papers of involvement and engagement (see examples here, here, here and here).

… we are pleased to highlight the first international guidance for reporting patient and public involvement in research…

These reviews found that although researchers and patients may have undertaken involvement and engagement in a study, they did not always report this, or they reported it partially, which meant the reader could only develop a limited understanding of what had happened in a the study, affecting the quality of the paper.

We view this poor reporting as a type of research waste, with valuable information collected in a study but then lost in the reporting process. Collectively this lost information has a significant impact on any evidence base, but is particularly important when a new evidence base is developing, such as it is with PPI, as it makes the synthesis of studies very difficult, which reduces the extent to which practitioners can draw on the evidence base to inform their practice.

Poor reporting is a recognized problem in health research and one of the main drivers in helping tackle this is The EQUATOR Network, based at the University of Oxford, which was established to develop reporting guidance for many types of health research.

For GRIPP2, the EQUATOR method was used to develop international consensus about the information that should be reported about involvement and engagement. A Delphi survey process was used, where participants indicate the extent to which they think certain types of information should be reported. From this emerged the idea of two versions of GRIPP2; one is a short form version, GRIPP2-SF, suitable for any study to guide on the full reporting of the PPI incorporated in that study, and the other is a long form version, GRIPP2 LF, suitable for studies with a primary focus on PPI or authors who wish to report a wider range of information.

Our hope is that both versions of GRIPP2 will provide helpful guidelines for researchers and patients, reassuring them that it is important to report involvement and engagement and helping authors identify the pertinent information that they should report in their paper.

Our hope is that both versions of GRIPP2 will provide helpful guidelines for researchers and patients, reassuring them that it is important to report involvement and engagement and helping authors identify the pertinent information that they should report in their paper. GRIPP2 can be used alongside other EQUATOR guidance to provide a more complete approach to reporting research.

As the PPI evidence base is relatively recent we can’t be prescriptive and enforce mandatory items to report. Instead we are encouraging authors to consider the usefulness of each item for their reporting. At Research Involvement and Engagement, we will be updating our Submission Guidelines to highlight this reporting resource and encourage prospective authors to use it when reporting.

We hope that funders and other journals internationally will utilize GRIPP2 in their guidance to researchers and authors. As with other EQUATOR guidance we expect GRIPP2 to develop over time, with refinements and new items being added as we develop GRIPP3.

It is an exciting time for involvement and engagement. GRIPP2 has the potential to significantly enhance our knowledge and create a high quality evidence base for all our benefit, helping enhance the quality of involvement and engagement and ultimately the quality, relevance, acceptability and appropriateness of research.

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