Top tips for carrying out patient and public involvement activities during COVID-19
In line with the recent NIHR shared commitments statement of public involvement, RDSWM is fully committed to supporting the continued involvement of patients and the public in research during the current COVID-19 pandemic. Our colleagues at RDS South Central had produced some useful top tips for carrying out public involvement activities while social distancing. The tips cover important issues such as identifying public contributors, supporting people to be involved remotely, and being mindful of people’s wider responsibilities during the crisis.
An introduction to PPI
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:
The involvement of patients and public in research can help:
PPI therefore goes beyond simply recruiting patients and members of the public as research subjects.
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.
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.
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.
RDS WM promotes and supports public involvement that make a meaningful difference to research funding applications. Please apply for a Public Involvement Fund early to ensure that the research design and application are genuinely informed and shaped by the views of public contributors. If the deadline for the main funding application submission is quite soon, RDS WM reviewers may consider that there will not be sufficient time to arrange and conduct the public involvement activity, and then reflect on the outcomes of the public involvement to inform the funding application. Also, it can take time to establish good relationships with public contributors. Therefore, we recommend that applications for a PIF are made no later than 6 weeks before the main funding application deadline.
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:
This fund will operate for the current financial year while funds last, then the scheme will be reviewed.
Apply for a Public Involvement Fund online (A word version of the application form is available here. Note - This document is to be used as a guide and to assist with completion of the on-line application form only)
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 Birmingham University.
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 (available to read as a pdf or HTML version).
We will deliver the following objectives in the West Midlands:
Full details of activities included in the RDS WM Regional Public Involvement work plan here
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
NIHR Research Design Service: A brief guide to public involvement in funding applications
A guide created by the NIHR Research Design Service to help research plan, manage and carry out public involvement activities for the development of research funding applications.
UK Public Involvement Standards
NIHR-endorsed standards developed to improve the quality and consistency of public involvement in research.
NIHR Briefing Notes for Researchers
Guidance for researchers new to public involvement in research and just starting to consider how best to involve members of the public in their work.
A website is dedicated to learning and development for public involvement in health and social care research: what’s it all about and how to do it well.
NIHR Learning for Involvement: Training
Search for public involvement training courses and resources. Part of the NIHR Learning for Involvement website.
NIHR Guidance on co-producing a research project
This guidance sets out the key principles and features of co-producing a research project and suggests ways to realise them.
NIHR Payment guidance for researchers and professionals
Guidance about budgeting appropriately for public involvement activities.
NIHR Plain English Summaries Guidance
Guide for researchers to how to write plain English summaries.
NIHR Public Co Applicants in Research Guidance
This resource is intended to give researchers and public contributors guidance on roles and responsibilities of public co-applicants on grant applications.
International guidance for reporting of patient and public involvement in health and social care research.
NIHR Research Design Service: A brief guide to patient and public involvement and qualitative methods within health and social care research
There are similarities in both the ways patient and public involvement (PPI) and qualitative research activities are conducted, and the language used to describe them. Because of this, the distinction between the two can sometimes be blurred. This guide outlines some key differences between a qualitative focus group and a PPI workshop, and describes how both approaches can support the development of research funding applications.
NIHR Research Design Service: Community Engagement Toolkit
Inclusive community engagement means more than ‘involving’ individuals and representatives as members of research steering groups and advisory groups. It is about planning research in the community, and with the community the research seeks to benefit. This toolkit outlines10 guiding principles to help you achieve this.
Funded by the NIHR, the James Lind Alliance Priority brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 unanswered questions or evidence uncertainties that they agree are the most important.
An online resource for researchers to post opportunities for members of the public to get involved in research.
The final report and recommendations to the Director General Research and Development/Chief Medical Officer (CMO) Department of Health of the ‘Breaking Boundaries’ strategic review of public involvement in the National Institute for Health Research (NIHR).
Information about how patients, carers and service users take part in and contribute to NIHR research.
Guide for members of the public new to involvement in health and care research wanting to find out more about why and how to get involved.
Public reviewing with the National Institute of Health and Care Research (NIHR)
An interactive course for new and experienced public reviewers of health and social care research. Researchers may also find this resource useful when writing research funding applications.
A guide for patients, carers and members of the public who are interested in getting involved in health or social care research. It aims to answer the questions that people frequently ask when they first get involved in research.
NIHR Payment guidance for members of the public considering involvement in research
Guide for patients, carers and members of the public thinking about getting actively involved in research and you are being offered expenses and/ or payment for your involvement.
NIHR Welfare Benefits Jobcentre Letter
Information for public members in receipt of welfare benefits and who are considering paid involvement.