Core outcome set study reporting

After undertaking the core outcome set (COS) study, research teams need to report their approach and findings. These are usually published in study reports, PhD theses and academic research articles but patients and the public are a key audience and increasingly there is an expectation that such publications include a plain language summary. COS research can also be reported in academic conferences where there may be representation from patients, the public or patient communities.

COS developers also have a responsibility to inform their study participants about the results of their work and to engage with the wider patient community. Additionally, COS developers are beginning to report their Patient and Public Involvement (PPI) activities in separate publications. Public research partners (PRPs) have an important role in COS study reporting.

Reporting COS study – findings and PPI

Is the information understandable and comprehensive?
Does it adequately and clearly explain the methods and findings?
Are there any limitations that you feel have not been highlighted about the work?
Do you think the conclusions are justified?
Have we adequately highlighted the importance of this work from a patient community perspective?
What do you think should be the key messages about the COS work?
Have any differences in opinion between stakeholder groups been transparently reported?
How have patient participants been involved in producing the report?

Is the information understandable and comprehensive?
Does it adequately and clearly explain how PPI was undertaken in the study?
Are there any limitations to the PPI that you feel haven’t been highlighted about the work?
Do you think the conclusions are justified?
What do you think should be the key messages about PPI in the COS work?

Who are the potential patient / public target audiences?
What is the best way to share the study results with the target audience?
What methods add value to communicating the study findings (e.g. podcasts / social media / video etc)

Access a PDF of the questions on this page here.

Relevant PPI resources

The following resources may be useful when involving patients / the public in COS study reporting?

Resources for PRPs

How to read a scientific paper? Resource produced by Understanding Health Research
How do I publish a paper? Animation for publication teams including public partners, by Equator Canada.
Reporting about PPI in a research study – what is the GRIPP2 reporting guidance? Staniszewska et al, 2017 (Lay summary)

Resources for COS developers involving patients / the public in their work

COS-STAR reporting guidance – General reporting standards for COS studies
Public involvement in disseminating study results – A resource in the Imperial College London Public Involvement Resource Hub
Guidance on authorship with and acknowledgement of patient partners in patient-oriented research – Richards et al, 2020
Examples of two research summaries for COS study participants (designed with patient involvement) are available:
- SCORE-IT study animation
- Prioritising health outcomes for children and young people with neurodisability information sheet
Reporting about PPI in a research study – GRIPP2 reporting guidance
An innovative toolkit: increasing the role and value of patient and public involvement in the dissemination of research findings – McNichol E & Grimshaw P (2014)
PPI reflection log

This part of the COMET PPI toolkit has been informed by resources in other toolkits / resource hubs: Imperial College London Public Involvement Resource Hub