UKCRN's commitment to patient and public involvement

The UKCRN 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, UKCRN is committed to supporting the involvement of patients and members of the public in its work.

Within the UKCRN Coordinating Centre, Roger Wilson is Associate Director for PPI and Marianne Miles is Patient/Public Involvement Lead. They aim to ensure PPI activities are coordinated across the identified priority topics, with plans to extend across other disease areas in time.

UKCRN Patient and Public Involvement Strategic Plan 2006-2008

UKCRN has developed a Strategic Plan for Patient and Public Involvement which sets out the vision and objectives for PPI work. It also details the short and long term plans for work in this area. Click the link below to download the strategy.

UKCRC Patient and Public Involvement Group

Working relations have been established between UKCRC, UKCRN, 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.

UKCRN Patient and Public Involvement Working Group

A UKCRN Patient/Public Involvement (PPI) Working Group has been established to encourage Topic Specific Clinical Research Networks/Primary Care Research Network PPI Officers, UKCRC, INVOLVE and representatives from Scotland, Wales and Northern Ireland to collaboratively discuss and review issues related to the implementation, development and evaluation of UKCRN PPI. Initial 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. A national strategy will be developed to ensure effective PPI from the onset

Topic Specific Clinical Research Networks

Each of the existing Topic Specific Clinical Research Networks has committed resources to support PPI within its disease area. Dedicated posts have been established, with Consumer Liaison Officers already in post within the Medicines for Children Research Network (MCRN) and the Diabetes Research Network (DRN). A Service User Research Group in England (SURGE) is part of the Mental Heath Research Network (MHRN). Recruitment to similar posts within the National Cancer Research Network (NCRN) the Stroke Research Network (SRN) and the Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) is currently underway. Once recruitment is complete, the UKCRN PPI Working Group already mentioned will include these posts as planned, to allow sharing of best practice to support effective involvement across a wide range of activities both locally and on a national level. Plans for PPI within the Primary Care Research Network will be developed once the Local Research Networks are established.

INVOLVE

INVOLVE works closely with UKCRN. 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/UKCRN.

Support for PPI

UKRCN 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 UKCRN activities will be evaluated to inform future best practice.