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Joint Research Management Office

PPI resources for researchers

Members of the public (including patients, potential patients, carers and health advocates) are getting involved and fulfilling crucial roles throughout the whole research process.  Patient and public involvement (PPI) in research is research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, and undertaking interviews with research participants. Below you will find useful links to help you engage and involve patients and members of the public in your research:

Introductions to PPIE

  • The NIHR's Briefing Note for Researchers covers how to involve members of the public in research, including detailed information on public involvement, case studies showing how the public has been involved in research projects and templates of useful documents. This guidance will help you to plan, resource and support public involvement in research.
  • The NIHR's Plain English Summaries guide has been written for members of the public, rather than researchers or professionals.  It explains that information should be written clearly and simply, without jargon and with an explanation of any technical terms that must be included. Using the guidance can make sure your research study has a clear and concise plain English summary.
  • The NIHR Learning for Involvement website offers a range of resources for researchers who want to increase their knowledge of PPIE within research. On the site you can search, complete and recommend resources you found useful.
  • Involving children and young people as advisors in research is a short overview of the key issues on involving children and young people in NHS, public health, and social care research. Developed by several Young People’s Advisory Groups (YPAG) and members of the INVOLVE Children and Young People’s working groups, it provides researchers with practical information on what they need to consider when involving children and young people in research.
  • Young Person’s Advisory Group (YPAG) online toolkit is designed to take you through each part of the process of setting up a YPAG and is split into four sections recommended by our users: understanding why it is important; getting started; delivering a meeting; evaluating the work, and the impact a YPAG can have on both the participants themselves and on child health research.
  • The UK Standards for Involvement provide a framework for reflecting on and improving the purpose, quality and consistency of public involvement in research. They describe the building blocks for good public involvement and provide a baseline of expectations. This helps the public know what to expect when involved in research, and researchers know what needs to be done.
  • The Research Design Service PPI Handbook helps you better plan, manage, and carry out meaningful patient and public involvement (PPI) during your research. The handbook addresses the most common questions and misunderstandings about PPI that we have come across while advising researchers.
  • How to involve and engage patients in digital health tech innovation was developed by Boehringer Ingelheim and the University of Plymouth and published by the AHSN Network. This evidence-based guide is a review of the best practice in patient and public involvement and engagement (PPIE) in commercial research, providing valuable advice and resources to digital health innovators and allowing for the development of digital products with patients front of mind.
  • PPIE in lab-based research: this web-based resource provides practical and accessible guidance for lab-based researchers at all stages of their careers on involving patients and the public in their research.

Payment and recognition for involvement

We have tailored guidance on reimbursing expenses and payments for involvement and participation in research for Barts Health and Queen Mary researchers elsewhere on this site. There you will find more information on making payments to public contributors who are actively involved in health and social care research as well as reimbursing the expenses to people who are taking part in research as participants. Additionally, the page includes links to the NIHR’s guidance on paying for involvement. 

Reaching underserved communities

Funding opportunities

  • Centre for Public Engagement (CPE). The CPE’s Small Grants are a monthly funding scheme, providing up to £1,000 of funding for Queen Mary staff and students to deliver small-scale projects which engage with the public. Three categories of awards are available (Public Engagement, Patient and Public Involvement, and Community Engagement), and the scheme is open with a rolling deadline of the fifteenth of each month.  See the CPE's website for further details of these funding schemes plus larger grants schemes.
  • Research Design Service (RDS). Diversity and Inclusion (EDI) in research fund pilot to health and social care researchers across London. Researchers can receive up to £300 towards activities that will help improve your grant application from the perspective of EDI. Applications are accepted on a rolling basis. More information and guidance can be found on the RDS website.
  • The RDS' Public Involvement Fund (PIF) is designed to help researchers implement public involvement as early as possible in their research design. You can apply for the PIF when you are planning to submit to any peer-reviewed applied health and social care research funding streams based in England. The maximum amount awarded is £350. 'PIF Plus' offers up to £750 to those submitting to the NIHR Programme Development Grants call for Developing Innovative, Inclusive and Diverse Public Partnerships. This fund is designed to help facilitate the involvement of under-served groups.

Local support for PPIE

  • The Barts Health Research Engagement team works with researchers, patients, and the public to build stronger partnerships in research development and delivery and encourage greater levels of engagement, participation and involvement in our research amongst patients and local residents.  The team provide a wide range of services, which include:
    • advising on inclusive patient and public involvement in research (for example in grant applications);
    • providing a forum for sharing best practices and problem-solving: Barts Health Patient and Public Involvement in Research (PPIR) Working Group; 
    • providing access to community organisations and local residents who want to get involved in healthcare research; 
    • organising research dissemination activities and events;
    • co-ordinating the NIHR Patient Research Experience Survey across all Barts Health hospitals; and
    • managing the Patient Research Champions volunteer initiative.

For more information, contact the Research Engagement team at patientsinresearch.bartshealth@nhs.net or visit our JRMO Public Involvement webpages on the JRMO website. Our public-facing research pages, aimed primarily at patients, can be found on the Barts Health website. 

  • The Centre for Public Engagement (CPE)  advises and supports engaged activity, working to embed public engagement further within the university.  Their aim is to build on Queen Mary’s strong history of public engagement to help support all staff in developing new activities and sustaining and strengthening existing projects. The Centre for Public Engagement runs regular public engagement surgeries where you can pick the team's brains about projects, funding, logistics and more.
  • The NIHR Research Design Service (RDS) London network provides help for researchers to prepare proposals for submission to NIHR and other national, peer-reviewed funding competitions for applied health or social care research by providing expert advice on research design and methodology. The RDS also offers bespoke advice and support regarding how to embed Public Involvement in research, information and guidance, including information on relevant groups and networks who may be interested in collaborating. RDS London also produces a monthly e-bulletin with the latest news and events that you can subscribe to.
  • Christine Menzies is the Patient and Public Involvement and Engagement (PPIE) Manager for NIHR Clinical Research Network - North Thames. She provides PPIE support to staff within the twenty Partner Organisations around North Thames and delivers several national projects including the Research Ready Community Champions programme, the Participant Research Experience Survey (PRES) and the Public Research Champions programme. To find out more about any of these national projects or to speak to Christine about PPI support and training taking place in North Thames or nationally, email Christine on christine.menzies@nihr.ac.uk
  • UCLPartners works closely with partner organisations, NIHR ARC North Thames and NIHR CRN North Thames to support applied health research and clinical trials across North Central London, North East London, and Mid and South Essex. It provides PPIE support to academics, researchers and allied health professionals by helping them understand what involvement is and why it’s so important, building their knowledge and skills to make it a core part of their work. You can join their newsletter mailing list or get in touch via email at contact@uclpartners.com to find out more about working with UCLPartners.

Miscellaneous

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