NIHR Evaluation Trials and Studies Coordinating Centre Patient and Public Involvement Reference Group
The Patient and Public Involvement (PPI) reference group will act in an advisory capacity to the PPI function of the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC). It will advise on the development of effective PPI ways of working at every stage of the research management process. This will be done in the context of the NETSCC Patient and Public Involvement Framework that provides the strategic approach for PPI across the organisation.
Terms of reference
The PPI Framework is governed by the NETSCC Senior Management Team. This PPI reference group will provide advice to the NETSCC Senior Management Team on the implementation of the PPI framework, including:
- support to NETSCC’s internal processes for promoting good practice in PPI
- promotion of good PPI practice among researchers as part of NETSCC’s researcher liaison activities
- training and support initiatives to develop public contributors in their various roles
- development of patients or members of the public who contribute to NETS research (‘public contributors’) as a network to build capacity, share experiences and improve processes
- communication initiatives to promote PPI in NETS Programmes and externall
- other patient and public involvement research and initiatives that might provide learning for NETSCC
- research that should be undertaken by NETSCC to show the impact of public involvement in NETS programmes.
The reference group will be co-chaired by the Assistant Director of Public Involvement and External Engagement at NETSCC and an external appointee with expertise and experience in the field of public involvement in health research.
We will recruit six people with a range of interests, two of whom will be previously unconnected with NETSCC.
Members will be appointed by a recruitment and selection process based on a clear role description and person specification.
A representative from INVOLVE will be appointed to the reference group as an ex officio member, as this organisation has responsibility for supporting the development of PPI in NIHR programmes.
The NETSCC Senior PPI Research Manager will attend the group as a member and will be responsible for its practical and administrative arrangements. Other NETSCC staff will attend as required.
The group may co-opt or invite others to attend the meeting as required relevant to the business under consideration
Public reference group members will be appointed for a term of between two and four years.
Paul Andersen (Co-Chair)
Public member of Ministry of Defence Research Ethics Committee and on the PULSE Ox Trial, Trial Steering Committee (TSC). Previous public member of the Department of Health, Policy Research Programme funding panel, NETSCC PPI Reference Group and NHS Research Ethics Committee, (Isle of Wight and Portsmouth / South Central)
Patient with long term genetic condition & carer
Former NIHR panel member
Member of INVOLVE National Advisory Group and Shaping Our Lives National User Group
Jon Cole (Co-Chair)
Assistant Director for Communications, PPI and External Engagement
20 years working for organisations "of and for" disabled people
Linda Parkinson Hardman
CEO of The Hysterectomy Association
Experienced public contributor on NICE and NIHR committees
The other organisational members of the reference group are:
- Gary Hickey
Senior Public Involvement Manager at INVOLVE
- Doreen Tembo
NETSCC Senior Research Manager, PPIE
Meeting agendas and papers will normally be circulated two weeks before each meeting. Any member of the reference group may ask for items to be included on the agenda. Minutes of the meetings will be agreed by the co-chairs prior to circulation to group members.
Members who are eligible for payment will be paid a meeting attendance fee and travel expenses in accordance with DH/INVOLVE guidance on payment.
New members will be given induction and meeting materials will be provided in formats to suit any accessibility needs.
Frequency and location of meetings
Reference Group meetings will be held four times a year in Southampton.
Approval of terms of reference
Author: Alison Ford, PPI Manager
Date Approved by SDPB: 8 April 2011, amended September 2012
Amendments: Updated by Heidi Surridge, PPI Manager, January 2016, to reflect organisational change.