Researchers involving patients and the public

Article about including patients in core outcome set development

Young, B. and Bagley, H. (2016) "Including patients in core outcome set development: issues to consider based on three workshops with around 100 international delegates." Research Involvement and Engagement, 2:25.

The Scottish Health Council have produced a resource to help people assess how accessible a venue is

The Accessibility Checklist can be found here.

What's it like taking part in a consensus meeting?

Two stories from patients explaining what it's like taking part in a consensus meeting.

You can download this document here

Tips for Designing an Accessible Core Outcome Set Consensus Meeting

You can download this document here

What are the research ethics considerations for core outcome set studies with patients?

This resource outlines the research ethics considerations for core outcome set studies with patients.

You can download this document here

How can we involve patients and the public in designing and overseeing our COS study?

The Patient and Public Involvement checklist for COS developers
This resource is designed to help researchers and public research partners working together in designing a COS study with patients as participants

You can download this document here

How can we meet the challenges of patient and public participation in a core outcome set study?

Patient and Public involvement in a core outcome set (The MOMENT study)
This video explains the involvement and participation of parents, young people and a patient organisation in a core outcome set study.



Including patients in core outcome set development: issues to consider based on three workshops with around 100 international delegates
This article describes three workshops that explored how patients can contribute to decisions about what outcomes are measured in clinical trials.

How can we best access patients for our COS study or to act as research partners?

Guidance has been developed in the UK by INVOLVE ^* and a link to this guidance is here
^* INVOLVE was established in 1996 in England and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research

How can we best explain a COS study to patients and ask the right question?

The Core Outcome Set / COMET plain language summary explains what outcomes are and the problems with using different outcomes in research. It also explains what core outcomes sets are, including how they are developed, and it sets out what the COMET Initiative is trying to achieve. You can download the Summary here.

The Delphi Process plain language summary explains what outcomes and consensus processes are and what happens in a Delphi process. You can download the Summary here.

EURORDIS webinar

This video explains: what core outcome sets are; why they are important; how patients are getting involved in their development and the role of the COMET Initiative.

Making information accessible for patients and the public

This document provides information on writing in plain English, readability and presentation of information to help you make your information accessible for patients and the

How can we evaluate and report on patient and public participation in your COS?

Evaluating participant experience of consensus meetings
This provides an example of an evaluation form developed by a core outcome set team to evaluate participant experience of a consensus meeting.
To download this document click here.

How can we best disseminate the findings of the COS study to patient participants?

End of study information
An example of end of COS study information for participants (designed with patient involvement) is available here