Get in Touch
To find our more about Patient and Public Involvement at CLAHRC EoE, please contact:
- For queries about the PPI Research: Elspeth Mathie, Research Fellow – Phone: 01707 281090 Email: email@example.com
- For queries about Operational PPI: Lorna Jacobs, PPI Lead – Phone: 01223 746148 Email: Lorna.Jacobs@cpft.nhs.uk
Resources and helpful links for PPI in Research
INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world. The INVOLVE website has a lots of useful information and publications about PPI in Research. The jargon buster is particularly helpful in explaining research terms.
- INVOLVE website
- INVOLVE jargon buster
- INVOLVE guidance on getting started
- INVOLVE guidance for Social Media
- INVOLVE guidance on payments
The McPin Foundation exists to transform mental health research by putting the lived experience of people affected by mental health problems at the heart of research methods and the research agenda. You can read more about the work they do on their website:
Parkinson’s UK have developed a ‘Patient and Public Involvement: Resource for Researchers’, which has been written to be helpful to all researchers, not just those in Parkinson’s Disease. You can download the resources from the Parksinson’s Uk website by clicking on the link below:
Research Involvement and Engagement is a new, innovative journal focussing on patient and wider public involvement and engagement in research:
A recent report from the RAPPORT study featured in this journal, is a good example of embedding PPI throughout the research cycle. The RAPPORT study selected ‘case studies’ of funded research projects adopted on the United Kingdom Clinical Research Network portfolio, and analysed the different approaches and extent of PPI. The report on the learning from the study can be seen here:
- RAPPORT study report – “Learning to work together – lessons from a reflective analysis of a research project on public involvement”
Local Mental Health Trusts
Cambridgeshire and Peterborough NHS Foundation Trust have a Service User and Carer Group (SUCG), through which there are opportunities to get involved in mental health and dementia research. More about their group and other useful information on PPI in Research can be found on the link to their website below:
- Service user and Carer involvement at Cambridgeshire and Peterborough NHS Foundation Trust
- Contact: Ruth Holmes, User and Carer R&D Manager by email at firstname.lastname@example.org
Norfolk and Suffolk NHS Foundation Trust run a scheme called INSPIRE, which stand for involving service users, carers and the public in research. It works to engage service users, carers and the general public from across Norfolk and Suffolk in all of the Trust’s Research activities. Members of inspire make up three panels that focus on different areas of research; youth, adult and older age. More information can be found on their website at this link:
NHS South Norfolk host the Patient and Public involvement in Research group (PPIRes). PPIRes is a local initiative to enable and encourage volunteer members of the public to collaborate with researchers in local Trusts and Universities in Norfolk and Suffolk. It has a panel of approximately 70 lay members from Norfolk and Suffolk and works closely with researchers to develop proposals from initial idea through to dissemination. Click on the link below for more information:
At the University of Hertfordshire: The Public Involvement in Research Group (PIRg) was established by CRIPACC in 2005. Its work is varied but, most importantly, the group collaborates with researchers to bring lay voices and opinions to studies, which helps to keep them grounded and in touch with patient and public perspectives. It 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. These spoke members increase diversity and participation when and where appropriate.
NIHR Research Design Service East of England
The NIHR Research Design Service (RDS) East of England works with health and social care professionals and service users who want to obtain funding for research to improve health and social care. They can provide advice and can also help to build research teams in order to develop proposals focusing on research in health that benefits patients. They have a section on their website dedicated to Involvement in Research, providing useful information for Researchers, and Service Users and Carers. You can find this section along the top menu in their website, via the link below:
CLAHRC EoE guidance and examples
CLAHRC Funding Application – The PPI Theme’s own Coordinating group developed guidance for researchers on what to consider in terms of PPI in their research. This guidance was designed for CLAHRC EoE Funding applicaitons, but the principles and links can be applied to other funding forms:
Terms of Reference – The IMPRESS study team have shared anonymised examples of the Terms of Reference used for their Advisory Group, and for PPI Co-researchers:
PPI in care homes – The RReACH project has developed guidance for researchers on actively involving care home residents in guiding research, as ‘Patient and Public Involvement’ collaborators. The ENRICH (Enabling Research in Care Homes) website has extensive information for researchers for carrying out research in care homes.
- Residents Research-Active in Care Homes (RReACH) Guidance Jan 2016
- ENRICH ‘carrying out research studies in care homes’
CLAHRC EoE PPI in Research Handbook for Researchers – DRAFT version.
In July 2015, the NIHR CLAHRC EoE delivered a PPI in Research Masterclass for researchers, in each of it’s 3 main locations (Cambridgeshire, Hertfordshire and Norfolk). A steering group comprising of lay members, researcher representatives from each of CLAHRC’s 6 research themes and chaired by a member of the core team. The format and content of the Masterclass was informed by a researcher survey on the respondents’ experience of PPI in research, their needs for support and preferences for training provision. Case-study presentations from both PPI representatives and researchers were used to support an introduction level of training, in which attendees could learn about PPI in an engaging way, learning from what was shared by those with PPI in research experience.
The steering group planned, in addition to providing training, to produce a handbook for researchers on carrying out PPI activities. A smaller working group of CLAHRC researchers was established to create this handbook. At each Masterclass, the researchers attending provided feedback and ideas for the handbook, which has been used to inform the content and format. The aim of the handbook is to be a ‘first-port-of-call’ resource for researchers new to PPI and / or at the start of their project to support them in planning and carrying PPI activities throughout the various stages of their research.
Please note this is a draft version only, and will be finalised following feedback. If you would like to comment on the handbook (e.g. how useful it is, the style, what’s good about it or what could be improved), please contact Lorna Jacobs (details above)
For more information on the Masterclass, please see our recent presentation: PPI Masterclass presentation 21.6.16 – Sarah Rae and Lorna Jacobs