Research Design Service: East Midlands
National Institute for Health Research

Patient & Public Involvement

An introduction to PPI

What do we mean by Patient and Public Involvement in Research?

Patient and Public Involvement (also known as user/lay involvement) in research is the active partnership between patients and/or the public and researchers.  By patients and the public we mean:

  • people who use, or have used, health or social care services
  • informal carers and families
  • members of the general public
  • organisations who represent users of NHS and social  services and user groups

The involvement of patients and public in research can help:

  • prioritise the areas of research which are most relevant and important to patients and members of the public
  • improve the design and management of studies by taking into account the patient and public perspective
  • analyse and interpret data
  • disseminate the findings of research studies to the wider public

PPI therefore goes beyond simply recruiting patients and members of the public as research subjects.

Why is patient and public involvement important?

The contributions of patients are considered valuable, providing alternative views from those of the research team or NHS staff. Patients are able to make judgements based on their lived experience and understanding of  health conditions and may have different aspirations and thoughts about health outcomes that health care professionals and researchers may not have considered. Increasingly funders of research now require PPI as a condition of funding. 

When should I involve patients and the public in the research development process?

As early as possible.  Many research funding streams now see the benefit of PPI and require it to be an active part of the design and conduct of the project.

RDS WM also recognises the fundamental importance of PPI in research and has a dedicated PPI team to directly support researchers, patients, or members of the public who wish to get involved in research. RDS WM  offers; experienced advice on how to involve patients and the public in the design and implementation of research programmes  as part of our support package to researchers.

RDS WM has a Public Involvement Fund available to researchers applying for funding. The fund is intended to help researchers get patients and members of the public involved in research at an early stage where they can be influential and make a meaningful difference to the research design. 


Public Involvement Fund

It is considered good practice to involve members of the public as early as possible in the research design process.  Funding public involvement at the grant application stage can be challenging.  The RDS 'Public Involvement Funds' aim to bridge that gap.  Funds are available to help facilitate public involvement in the development of research ideas and research grant applications.

If you wish to apply to the Public Involvement Fund, you must be intending to submit a research proposal to a peer reviewed research funding body.  Also, to qualify for an RDS WM fund, you must be intending to conduct the research within the West Midlands region.

Features of the Public Involvement Fund:

  • Clear application form
  • Up to £350 per project
  • Swift decision

This fund will operate for the current financial year while funds last, then the scheme will be reviewed.  

If you have any questions or require further details of how to apply for the fund do not hesitate to contact Dr Steven Blackburn directly at Keele University (Tel: 01782 734846).


RDS WM Regional Public Involvement Work Plan

We undertake a number of regional activities to deliver our aim to promote and support excellence in public involvement in research design throughout the West Midlands. Our work plan is will also implement the RDS National Public Involvement Community Strategy  and deliver the recommendations in the NIHR Going the Extra Mile report.

Objectives

We will deliver the following objectives in the West Midlands:

  1. Provide high quality advice to researchers about public involvement in research design
  2. Improve the quality of public involvement in research design, by promoting and adopting the new UK Standards for Public Involvement
  3. Support public contributors to work with us as valued partners in our governance and client support services, using the UK Standards to frame our public involvement activities
  4. Promote and communicate RDS activity in public involvement
  5. Provide regional leadership to address priorities for public involvement
  6. Support the coproduction of and community engagement in research design
  7. Contribute to national RDS Public Involvement Community to support the sharing of best practice and service improvement

Full details of activities included in the RDS WM Regional Public Involvement work plan here


Patient and Public Involvement Resources

General Information

PILAR
Website of PILAR (Public Involvement and Lay Accountability in Research and innovation). A network bringing together researchers, academics and NHS organisations to share learning and improve PPI practice in the West Midlands

INVOLVE
Website of the national advisory group to support and promote active public involvement in NHS, public health and social care research.


Public and Patient Involvement in Practice

Benefits advice service for involvement
Information about a new service offering personal advice and support on how payment of fees and expenses for public involvement might affect people in receipt of state benefits.

INVOLVE: Briefing notes for researchers
This online resource holds useful briefing notes for researchers on how best to involve members of the public in research.

RDS Patient and public involvement in research: a handbook for researchers
The RDS PPI handbook has been created for researchers as a guide to help in the planning, managing and implementation of PPI activities.

INVOLVE: Involvement cost calculator
Information and practical advice about the costs of public involvement in research, with a tool to help researchers plan a budget for public involvement.

How to write a plain English summary
Guidance and recommendations for how to write high quality and effective plain English summaries for grant applications and materials for a public audience.  Developed by INVOLVE.

NIHR: Making it clear campaign
The National Institute for Health Research (NIHR) is committed to making sure that each research study if funds has a clear and concise plain English summary.  Guidance has been developed for researchers and for board and panel members.


Evidence, Impact and Reporting

INVOLVE: Exploring public involvement in research funding applications
Examples illustrating how researchers are involving members of the public in their NIHR funding applications and to explore the views of the researchers on the impact public involvement had on the development of their research funding application.

Making the difference: actively involving patients, carers and the public
Examples from the NIHR Clinical Research Network of how the involvement of patients, carers and the public is making the difference in research.

InvoNet: Evidence database of public involvement in research
INVOLVE's evidence database of references and abstracts of reports and articles that cover:

  • the impact of public involvement on research
  • the nature and extent of public involvement in research, for example mapping public involvement
  • reflections on public involvement in research.

Public involvement impact assessment framework (PiiAF)
PiiAF has been produced to help researchers assess the impacts of involving members of the public in their research.  Developed by Jennie Poppay and colleagues.

The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research

The GRIPP checklist represents the first international attempt to enhance the quality of PPI reporting.  Developed by Sophie Staniszewska and colleagues at the Universities of Warwick and Sheffield.   GRIPP2 - is now available and builds on GRIPP through a consensus informed checklist for reporting patient and public involvement.