Article type
Year
Abstract
Background:
The evidence base for public and patient involvement (PPI) and community based participatory research (CBPR) in health service research has grown in the last 30 years. The roles and responsibilities of patients and the community have also evolved to include being co-applicants in research funding applications, co-researchers, and project team members. The barriers and enablers to these roles are becoming more clearly understood as is the role of PPI in reducing waste (Minogue and Wells, BMJ 2019).
Whilst professionals understand their roles and responsibilities in a research study, PPI and community representatives may not be aware of the full implications and responsibilities of taking on these roles. Many PPI representatives are volunteers and unable to access the supportive mechanisms of employers HR processes.
Evidence collected by a PPI group actively involved in all aspects of research activity suggested there was a lack of understanding on the part of PPI representatives, community groups, researchers, and research sponsors, of the barriers resulting from ethical, legal and governance factors relating to involvement as co-applicants, co-researchers, and team members.
Objectives:
Ensure PPI representatives, community groups, research funders, sponsors, investigators and research managers are aware of the responsibilities, ethical and legal implications of PPI and CBPR and how to address the barriers to involvement.
Understand the contractual and legal issues and responsibilities that are particular to PPI and CBPR co-applicancy, project team membership and co-research, from an organisational and individual perspective.
Methods:
A literature review, review of current practice, data collection of narrative experiences, 2 workshops, consultation exercise, production of guidance, pilot phase, development of case studies relating to contractual and legal issues.
Results:
The review and consultation led to collaborative working with research managers across the NHS and with the NIHR and HRA. Guidance for research managers, researchers and PPI was published in January 2019 with further guidance on CBPR produced for consultation in January 2020.
Conclusions:
The contractual, legal and governance issues and responsibilities that are specific to PPI and CBPR co-applicants, co-researchers and team members are not fully understood by PPI and CBPR representatives, sponsors, researchers or research managers. The new guidelines have contributed to raising awareness and increasing patient empowerment in research and reducing negative experiences for PPI representatives.
Patient or healthcare consumer involvement:
The project was conceived, initiated and undertaken by the service user and carer working group of the NHS RD Forum. In undertaking the project, the group liaised with NIHR INVOLVE which resulted in a joint piece of work to produce a further set of guidelines aimed at PPI representatives and researchers (published January 2019).
This abstract is an updated & revised version of a Cochrane 2019 submission.
The evidence base for public and patient involvement (PPI) and community based participatory research (CBPR) in health service research has grown in the last 30 years. The roles and responsibilities of patients and the community have also evolved to include being co-applicants in research funding applications, co-researchers, and project team members. The barriers and enablers to these roles are becoming more clearly understood as is the role of PPI in reducing waste (Minogue and Wells, BMJ 2019).
Whilst professionals understand their roles and responsibilities in a research study, PPI and community representatives may not be aware of the full implications and responsibilities of taking on these roles. Many PPI representatives are volunteers and unable to access the supportive mechanisms of employers HR processes.
Evidence collected by a PPI group actively involved in all aspects of research activity suggested there was a lack of understanding on the part of PPI representatives, community groups, researchers, and research sponsors, of the barriers resulting from ethical, legal and governance factors relating to involvement as co-applicants, co-researchers, and team members.
Objectives:
Ensure PPI representatives, community groups, research funders, sponsors, investigators and research managers are aware of the responsibilities, ethical and legal implications of PPI and CBPR and how to address the barriers to involvement.
Understand the contractual and legal issues and responsibilities that are particular to PPI and CBPR co-applicancy, project team membership and co-research, from an organisational and individual perspective.
Methods:
A literature review, review of current practice, data collection of narrative experiences, 2 workshops, consultation exercise, production of guidance, pilot phase, development of case studies relating to contractual and legal issues.
Results:
The review and consultation led to collaborative working with research managers across the NHS and with the NIHR and HRA. Guidance for research managers, researchers and PPI was published in January 2019 with further guidance on CBPR produced for consultation in January 2020.
Conclusions:
The contractual, legal and governance issues and responsibilities that are specific to PPI and CBPR co-applicants, co-researchers and team members are not fully understood by PPI and CBPR representatives, sponsors, researchers or research managers. The new guidelines have contributed to raising awareness and increasing patient empowerment in research and reducing negative experiences for PPI representatives.
Patient or healthcare consumer involvement:
The project was conceived, initiated and undertaken by the service user and carer working group of the NHS RD Forum. In undertaking the project, the group liaised with NIHR INVOLVE which resulted in a joint piece of work to produce a further set of guidelines aimed at PPI representatives and researchers (published January 2019).
This abstract is an updated & revised version of a Cochrane 2019 submission.