Co-Produced Research and Community Engagement

Guidelines for Ethical Review

1. Introduction

Engagement with external partners with an active interest in research (Community Members) is encouraged by funders and regulators. Engaging Community Members in research can take many forms with differing levels of involvement, from consulting Community Members on specific issues to active partnership between Community Members and researchers that influences and shapes research (including Patient and Participant Involvement and Engagement - PPIE) or Co-Produced research, whereby research is co-created, conducted and delivered with members of the community.

These Guidelines establish the University of Manchester’s ethical framework for research projects and the conduct of researchers engaging with Community Members.

2. Definitions

Community Member: A person who is not a University of Manchester member of staff or student. This would not include academics from other HEIs being engaged in their professional capacity.

Research Participant: A person who participates in a research project as the subject of the research by, for example, completing a questionnaire, being interviewed and providing data about themselves that will be analysed and included as part of the research outputs.

Research Team: A group of individuals, including UoM staff, students and Community Members, who work collaboratively to perform the activities for a research project (e.g. design, recruitment, data collection, analysis and output activities). All members of the Research Team should be familiar with and adhere to the University of Manchester’s Code of Good Research Conduct.

Community Engagement: This term covers all forms of engagement with Community Members, including PPIE, and refers to the involvement of Community Members in the research. Community Members may provide their thoughts, opinions and/or suggestions for how to create or refine elements of a research project and may be involved in collecting and/or analysing data for the project that will be included as part of the research outputs.

Formal Ethical Review: This is the requirement to gain independent ethical review by an ethics committee constituted under University policy or recognised as equivalent to the approval granted by the University (e.g., by the Health Research Authority, NHS REC or MODREC).

Formal Ethical Considerations: These are the Formal Ethical Considerations that all members of the University are expected to make in their professional capacity before and while embarking on a research project which would include the assessment of risk and safeguarding of all those involved in the research project. These are outlined as part of an application for Formal Ethical Review.

Ethics Best Practice Expectations: These are the best practice ethical and integrity considerations that all members of the University are expected to reflect on and implement before and throughout undertaking research activities. These apply to all pieces of University research (including those that are classed as ethically exempt) as well as non-research activities (e.g. PPIE).

3. Community Member Roles in Research

A Research Team may engage with Community Members in many ways, whereby they may perform different roles from Advisors and Data Collectors through to Co-Investigators (see table below). The different roles the Community Member plays in a research project can raise different ethical considerations, and as research evolves, these ethical considerations can change over time.

If the role of the Community Member is limited to Community Engagement activities only, Formal Ethical Review for their engagement will not be required, although Ethics Best Practice Expectations will still apply. Also, the project, as a whole, may still require Formal Ethical Review under University Policy (determined by the Ethics Decision Tool) if the project involves Research Participants or activities that raise Formal Ethical Considerations.

If the role of the Community Member is that of a Research Participant, Formal Ethical Review may be required, and researchers should verify this by using the Ethics Decision Tool.

Below summarises the different Community Member roles in research.

Co-Investigator / Research Team member: The Community Member is engaged from the outset in the design of the research, the funding application and the delivery of the research.