Patient and public involvement groups

The East of England region has several groups composed of members of the public and patients with different conditions who are brought together for the purposes of supporting research, and who have often had some basic research training, usually specifically aimed at service users. It is possible to send proposals or and other project documentation to these groups for review, and invite members of these groups to be part of your project steering committee.

People are encouraged to contact the co-ordinators of these group to see how they can work together to design and carry out research.

Cambridgeshire

Addenbrookes Hospital PPI Panel.

Cambridge University Hospitals Foundation Trust currently has a panel of 60 active members from all backgrounds and all ages, who review research studies at the development stage and provide feedback to researchers. Feedback is provided via e-mail.

Contact: Anna Ellis, Website

Hertfordshire

University of Hertfordshire Centre for Research in Primary and Community Care (CRIPACC)
Public Involvement in Research Group (PIRg),

The public Involvement in Research Group (PIRg) was established by University of Hertfordshire Centre for Research in Primary and Community Care (CRIPACC) in 2005.  The group adopts ‘hub and spoke’ approach to membership and involvement.  The ‘hub’ is a permanent, centralised group with a core membership of around 15 people.  The ‘spokes’ utilise local users of services, and existing PPI groups and networks for specific projects.

Contact: Julie Mace, Website

Norfolk and Suffolk

PPIRes (Patient and Public Involvement in Research).

NHS South Norfolk host PPIRes which a local initiative to enable and encourage volunteer members of the public to collaborate with researchers in local NHS trusts and universities in Norfolk and Suffolk.  It has a panel of approximately 70 lay members from across Norfolk and Suffolk and works closely with researchers to develop proposals from initial ideas through to dissemination.

Contact: Jacqueline Romero, Website

Bedfordshire and Cambridgeshire

INsPIRE (patIeNt and Public Involvement in REsearch,

INsPIRE is a new PPI group of 30 with diverse personal histories and experience is hosted by Cambridgeshire Community Services NHS Trust. The group gets involved with all types of health and social care research. Members presently meet with researchers to discuss research ideas, review project documents and sit on advisory and steering groups. Many of the members have been trained to provide PPI at all stages of research.
Contact: Paula Waddingham, website

Essex

University of Essex School of Health and Human Sciences (SHHS),
Service User Reference Group (SURG),

SURG supports the teaching and governance arrangements at the school. SURG members consist of a diverse group of individuals. Members have expressed an interest in providing PPI input for research.

Contact:  Sarah Lee, Website,

Condition Specific Groups

There are also condition specific groups whose members may be able to provide PPI input into your research.

Cambridge and Peterborough

Mental health PPI group at NHS Cambridgeshire & Peterborough Foundation Trust.

This is a group of mental health service users and carers who provide PPI input to all stages of the research process.

Contact: Ruth Holmes, website

Norfolk and Suffolk

inspire involving service users, carers and the public in research at the Norfolk and Suffolk NHS Foundation Trust.

inspire is the first mental health focused scheme within Norfolk and Suffolk to engage service users, carers and the general public in all NSFT research activities.  Members make up three panels focusing on research for: youth, adult and older age.

Contact: Rhianna Broadway, website

For further information about other groups and networks, please visit NIHR INVOLVE invoDIRECT.  This online resource is a directory of networks, groups and organisations that support active public involvement in NHS, public health and social care research. The resource will allow individuals or networks, groups or organisations to be aware of and make contact with others who are carrying out similar work.