What do consumers think should be reported about consumer involvement in research?

Workshop category: 

  • Patient or healthcare consumers involvement and shared decision-making
Date and Location

Date: 

Sunday 16 September 2018 - 14:00 to 15:30

Location: 

Contact persons and facilitators

Contact person:

Facilitators:

Staniszewska S1, Morley R2, Bagley H3
1 University of Warwick Medical School, United Kingdom
2 Cochrane UK, United Kingdom
3 Patient and Public Involvement, Core Outcome Measures in Effectiveness Trials [COMET] Initiative, University of Liverpool, United Kingdom

Acknowledgements:

Denegri S1, Haywood K2, Seers K3, Brett J4, Skrybant M5, Hickey G6
1 NIHR, UK
2 University of Warwick Medical School, UK
3 University of Warwick, UK
4 Oxford Brookes University, UK
5 University of Birmingham, UK
6 INVOLVE, UK
Target audience

Target audience: 

Consumers and reseachers

Level of difficulty: 

Basic
Type of workshop

Type of workshop : 

Discussion
Abstract

Abstract:

Background:
Consumer involvement in health research is vital to high quality research and should be reported alongside study outcomes. The development of Guidance for Reporting Involvement of Patients and the Public (GRIPP2) helps researchers identify key things they need to report about their consumer involvement (Staniszewska 2017). Consumers involved in GRIPP2 development identified the need to explore what consumers think should be reported, beyond the traditional research paradigm, and this workshop provides an opportunity to co-produce new concepts. The workshop is part of an initial programme of work linked to the International Network for Patient and Public Involvement (blogs.bmj.com/bmj/2017/11/30/tessa-richards-patient-and-public-involvement-in-research-goes-global), and members of the group will be involved.

Objectives:
To engage with consumers to identify consumer-important concepts relevant to high quality research that should be reported alongside GRIPP2 and ultimately contribute to the development of GRIPP2_PV (Patient Version).

Description:
We will start with an introduction to high quality reporting and the development of GRIPP2. Participants will be encouraged to step into a new paradigm, one in which consumers are leading on the development of high-quality reporting, to support participants to think ‘outside the box’. We will utilise a world café format with a facilitator enabling discussion at each table. Three concepts of relevance to high-quality reporting generated by consumers (Haywood and Staniszewska, in press), ‘Right, Relevant and Robust’ will be utilized to generate debate. Consumers will be given a menu with each course representing an area of discussion. The starter will be a general discussion about what consumers feel is important to report. The main course will focus on the concept of ‘right’ what does this mean from a consumer perspective and how can we report that? Pudding will focus on the concept of ‘relevant’ and explore what this means. Finally the cheese course will consider the concept of ‘robust’ and what this means from a consumer perspective. The workshop facilitators will draw out key concepts from this discussion, and the final brief workshop session will collate the thinking of the group, and enable consumers to identify any other important concepts relevant for a consumer version of GRIPP2.

Relevance to patients and consumers: 

Consumers have a stake in defining what should be reported about their involvement in research. So far we have published the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist that guides reporting of public and patient involvement, but this is based on researcher-defined concepts of quality. Consumers who were involved in development of GRIPP2 identified the need to explore what other consumers think should be reported about their involvement with research, and will be at the workshop. The workshop will explore and create an opportunity for working together to develop a patient version of GRIPP2 in the future.