Public Involvement groups and networks

Public Involvement groups and networks

The East of England region is well served by a number of well established research advisory groups involving members of the public and people with lived experience of health and social care services.  The members of these groups are very keen to be involved in various stages of research design and delivery and have often received some basic research training. It is possible to send research plans and information to these groups for review, and also invite relevant members of these groups to be involved in your project team e.g. as a member of your project steering committee. Please open the relevant tab below to find the groups nearest to you.

Below are also tabs signposting to our regional NIHR and partner public involvement in research voice networks. These involve many regional public involvement leads and public partners and have a wealth of knowledge and experience. They are also linked to INVOLVE.

Finally there is a link to some useful national public involvement communities which you may find useful.

For further information please contact the group co-ordinator as listed or Tracey Johns.

CambridgeshireEssexHertfordshireNorfolk & SuffolkRegionalNational

NIHR Cambridge Biomedical Research Centre

Coordinators are available to give advice and support for researchers engaging with Patient and Public Involvement (PPI) and to help researchers develop PPI strategies for their research projects. They can also assist with access to a panel of public volunteers (the Cambridge University Hospitals Patient and Public Involvement (PPI) Panel), with and without health conditions, who will share insight into their lived experiences, provide a public interest view point, review documents, join focus groups or comment on research proposals. The ‘Young People in Research Programme’ has concluded in its current format, following our wrap-up event in June. We are currently reviewing feedback from this years’ cohort and working with collaborators to redevelop the structure of the program. Interest from local young people remains strong, and we hope to be able to reopen this resource in the autumn term. If you have a project that is relevant to young people, please get in touch.

Email: ppi@addenbrookes.nhs.uk

Telephone: 01223 254620

The Cambridge Patient Led Research Hub (PLRH)

The Hub supports patient-led research, working in partnership with patient groups to deliver clinical studies based on their own research questions. The PLRH was established in 2015 by members of the Cambridge Clinical Trials Unit (CCTU) from the University of Cambridge and the Cambridge University Hospitals NHS Foundation Trust. We have expertise in the design and delivery of large and complex national and international clinical trials. Importantly, we do not have a specific research focus, allowing us to support research proposals from any patient group, on any topic.

Email: plrh@hermes.cam.ac.uk

Telephone: 01223 274570

The Cambridge and Peterborough NHS Foundation Trust(CPFT) Service User and Carer Research Group (SUCRG)

Involving service users and families with lived experience of mental health in developing research alongside researchers and clinicians. For further information please contact: Iliana Rokkou – User and Carer R&D Manager.

Email: Iliana.rokkou@cpft.nhs.uk

Tel: 01223 465182

University of Essex School of Health and Social Care, Service User Reference Group (SURG)

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

Email: surg@essex.ac.uk

Clinical Research Network North Thames Patient Research Ambassadors (PRAs)

CRN North Thames provides the infrastructure that allows high-quality clinical research to take place in the NHS across 23 trusts and 850 GPs ranging from Barts Health NHS Trust in central East London to Southend University Hospital NHS Foundation Trust on the East coast of Essex. Within North Thames there are a group of volunteer Patient Research Ambassadors (PRAs) who help increase awareness about research in their local area. A small number of the PRAs are also involved with their local trusts to advise on the design and delivery of new clinical trials.

More information can be found on the patient and public page of CRN North Thames website (https://www.nihr.ac.uk/nihr-in-your-area/north-thames/patients-and-public.htm)

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

PIRg adopts a ‘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: Sonya Prime

Email: prime@herts.ac.uk

The Public & Patient Involvement in Research (PPIRes)

This project is a local initiative to enable and encourage volunteer members of the public (through support and training) to collaborate with researchers in developing research in primary and secondary care, through Trusts and Universities in Norfolk and Suffolk. The PPIRes group is part of the Norfolk & Suffolk Primary and Community Care Research Office, hosted by NHS South Norfolk Clinical Commissioning Group (CCG). PPIRes has a panel of approximately 60 lay members from Norfolk and Suffolk and works closely with researchers and volunteers to develop proposals from initial idea through to dissemination.

Visit our website nspccro.nihr.ac.uk or follow us on Twitter @NHS_NSResearch

Contact: Jacqueline Romero

Email: SNCCG.ppiresoffice@nhs.net.

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

NSFT 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

Email: inspire@nsft.nhs.uk

East of England Public Involvement Voice Networks

In the East of England we have a two well established public involvement groups involving  NIHR, NHS and other regional and local organisations and groups with a shared interest in working together to support public involvement in research across the region.

Public Involvement Research Partnership Working Group

Membership is open to any public involvement co-ordinators and public partner representatives from organisations and PPI groups with an interest in health, social care and research in the region. This group meets twice a year in Cambridge in addition to specific task and finish working groups.

Contact: Tracey Johns

Email: tracey.johns@essex.ac.uk

East of England NIHR Public Involvement Collaborative

Members are nominated Public Involvement Leads and public partners with strategic responsibility for regional working from NIHR organisations, EAHSN and Citizen Senate. The remit of this group is to align regional public involvement strategies and to provide joint resources to deliver regional priorities.

Contact: Amanda Stranks

Email: amanda.stranks@addenbrookes.nhs.uk

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.

Charity Involvement Directory

This includes links to the key contacts for the national charities who are members of the Shared Learning Group on Involvement in research (http://slginvolvement.org.uk/). These charities all support the active involvement of patients and carers in research.