UKCRN's commitment to patient and public involvement

The NIHR CRN CC forms one of the key components of the UK Clinical Research Collaboration (UKCRC), whose aim is to oversee the efficient and effective translation of scientific advances into patient care, supported by funding from a variety of governmental, public sector, charitable and industrial funding bodies.

Working closely with UKCRC and a range of other organisations for whom research is a priority and within which a programme of patient and public involvement (PPI) is in place or is actively being planned, NIHR CRN CC is committed to supporting the involvement of patients and members of the public in its work.

Within the NIHR CRN CC, Derek Stewart is Associate Director for PPI, Marianne Miles and Roger Steel are Patient/Public Involvement Managers and Roger Wilson acts as Special Advisor. They aim to ensure PPI activities are coordinated across the identified priority topics, with plans to extend across other disease areas in time.

NIHR CRN CC Patient and Public Involvement Strategic Plan 2006-2008

The NIHR CRN CC PPI Team is currently developing a Strategic Plan for Patient and Public Involvement, to build on the progress made as a result of the initial strategy which set out a vision and objectives for 2006-2008. To see a copy of the existing strategy, click on the link below.

A copy of the new strategy, detailing both short and long term plans for PPI across the Networks and different work areas of the Coordinating Centre will be made available shortly.

UKCRC Patient and Public Involvement Group

Working relations have been established between UKCRC, NIHR CRN CC, and all UKCRC partners (including INVOLVE, the Medical Research Council, the Royal College of Physicians, the National Institute for Clinical Excellence, the Association of Medical Research Charities, and the Wellcome Trust) via the development of a UKCRC PPI Group. This group will discuss and advise on setting an agenda that adds value to current PPI activities on a national level, ensuring that practices are not duplicated. The group plans to address high profile issues regarding clinical research and PPI that cannot easily be tackled by individual organisations. In addition, UKCRC have appointed a Programme Manager for PPI and Research Workforce to join the UKCRC Core Team.

NIHR CRN CC Patient and Public Involvement Working Group

A NIHR CRN CC Patient/Public Involvement (PPI) Working Group has been established to encourage Topic Specific Clinical Research Network PPI Officers and representatives from Scotland, Wales and Northern Ireland to collaboratively discuss and review issues related to the implementation, development and evaluation of NIHR CRN CC PPI. Priority areas being considered include recruitment of patient/public representatives within each TCRN, identification/provision of training and support, provision of information to increase public awareness of clinical research, guidance on payment for patient/public representatives, and the establishment of TCRN PPI Expert Working Groups.

Topic Specific Clinical Research Networks

Each of the existing Topic Specific Clinical Research Networks has committed resources to support PPI within its disease area, and dedicated PPI posts have been established, contributing to the membership of the previously mentioned  NIHR CRN CC PPI Working Group. PPI within the Primary Care Research Network is directly supported by the NIHR CRN CC PPI team.

INVOLVE

INVOLVE works closely with NIHR CRN CC. With clinical research attaining increasing support within this Unit. Maryrose Tarpey, Public Involvement Coordinator (Clinical Research) at INVOLVE, is taking forward the work to promote and support PPI within clinical research and the work of UKCRC/NIHR CRN CC.

Support for PPI

NIHR CRN CC recognises the need to support PPI, and in addition to the infrastructure described above, a training programme for those involved is being developed to ensure all needs are supported. Information will be provided via a range of formats. The processes and methods used to involve patient/public representatives will be regularly reviewed, and PPI in NIHR CRN CC activities will be evaluated to inform future best practice.

Last updated: 8 June 2009