NIHR Evaluation Trials and Studies Coordinating Centre Patient and Public Involvement Reference Group
The PPIRG 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 and Engagement (PPIE) Internal Framework that provides the strategic approach for PPI across the organisation.
Terms of reference
The PPIE Internal Framework and annual business plans are governed by the NETSCC Senior Management Team and ultimately the Department of Health. This PPIRG 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 community activities
- training and support initiatives to advise public contributors in their various roles
- training and support initiatives for NETSCC staff and researchers
- 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 externally
- other patient and public involvement research and initiatives that might provide learning for NETSCC
- evaluations that are undertaken by NETSCC to show the impact of public involvement in NETS programmes.
- The PPIRG will be co-chaired by the Assistant Director for Public Involvement and External Engagement (PIEE) at NETSCC and external public co-chair. A volunteer public member will act as co-chair if the public co-chair is absent. The NETSCC Senior PPI Research Manager will deputise when the Assistant Director for PIEE is absent.
- The PPIRG will consist of between five and seven public members and one public co-chair with a variety of interests and experience. The group will aim to have at least two public members previously unconnected with NETSCC formally constituted bodies.
- Members will be appointed by an open recruitment and selection process based on a 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
- The group may invite observers such as NETSCC staff or PIViN members for learning and development.
- Public PPIRG members will be appointed for a term of between two and four years.
- The normal tenure for public members is four years. Tenure may be extended further for members that are subsequently appointed as co-chair, or as deputy co-chair.
- Meeting agendas and papers will normally be circulated two weeks before each meeting. Any member of the PPIRG 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. At the beginning of each meeting the previous meeting's minutes will be reviewed for accuracy and agreed as final.
- Members who are eligible for payment will be paid a meeting attendance fee and travel expenses in accordance with the NETSCC Public Contributor Payment Policy. Payment for other ad hoc project or task related work will be agreed in advance and paid according to the above policy.
- New PPIRG members will be given an induction.
- Meeting materials and venues will be provided to suit members' accessibility needs.
Frequency and location of meetings
- Reference Group meetings will be held three times a year in Southampton or via video/teleconference.
- There will be an extra joint meeting with the NETSCC Public Involvement Virtual Network (PIViN) annually to be held in London.
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
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