Patient and Public Involvement for Researchers

Nathan Babiker, Researcher, Psychological Services

Arranging two PPI focus groups before finalising our research proposal helped us completely re-think the study aims, and gave a far better understanding of its potential public impact than the available literature base.

Patient and public involvement (PPI) in research means research which is done with and by patients and/or the public, rather than to, for or about them (Buckland et al, 2007). Involvement in research refers to an active partnership between researchers and patients and/or the public in the research process.

PPI is important as it enables researchers to design, manage and undertake research projects in collaboration with patients and/or the public, which leads to research that is relevant to the patient groups.

Many health research funding streams now require patients and the public to be involved in research design and the development of grant applications. The easiest way to do this is to contact one of our current lay advisory patient panels in an area that matches your research. Or you can set up your own one-off group or permanent project panel yourself. The Clinical Research & Innovation Office has a PPI team that will help you set up patient panels and design public involvement within your grant applications.

Please contact a member of our team for advice or further information:

• Lucy Wasinski - lucy.wasinski@nhs.net;  0114 22 65911
• Dan Lawrence - daniel.lawrence12@nhs.net; 0114 22 68475

What is PPI?

Find out here

Our Lay Advisory Panels

More information available here

Support for researchers wishing to engage with patients

National Standards for Patient & Public Involvement

There are a set of six National Standards to guide you with your Patient & Public Involvement activities. Full details of these standards can be found on the link below:

https://sites.google.com/nihr.ac.uk/pi-standards/standards

The standards were developed through a national consultation with staff, patients and the public and were officially announced in April 2018. You can contact the Patient and Public Involvement Team for more information:

E: ccfppi@nihr.ac.uk T: 020 8843 8041

NIHR

NIHR Research Design Service for Yorkshire & the Humber (RDS YH) supports researchers to develop and design high quality research proposals for submission to the NIHR and other national, peer-reviewed funding competitions for applied health or social care research.  RDS YH also run a funding award several times a year that gives up to £500 awards to researchers within the Yorkshire and Humber region who require funding to support patient and public involvement at the research design stage. To find out more go to the RDS Y&H PPI funding pages.

The National Institute of Health Research (NIHR) is the major funder of clinical research in the UK and encourages patient involvement. Researchers can access resources specific to PPI on the NIHR webpage by clicking here.

The NIHR Clinical Research Network also offers advice on how to involve patients in your research. To find out more please click here.

INVOLVE

INVOLVE was a national advisory group that supported greater public involvement in NHS, public health and social care research.  (see below). The INVOLVE website is no longer actively supported or updated.

NIHR Centre for Engagement and Dissemination
In 2020, the NIHR launched the Centre for Engagement and Dissemination.This bought together its activities in patient and public involvement, engagement and participation with its strengths in research dissemination. It builds on the work of NIHR INVOLVE.

People in Research

People in Research is a website created for members of the public who would like to find out more about public involvement in research.

Research Champions at STH

The development of the Research Champion role has recently come to fruition at STH NHS FT. The aims of this role are to capture and engage staff within the directorates across the Trust, to spread the knowledge of current research activities and promote patient involvement. Please see here for more information and the Research Champion and Cafes strategy

Useful PPI Documents

Examples of useful documents can be found here:

	Panel Information Sheet
	Panel Terms of Reference
	Description of chairman duties
	INVOLVE Guidance for chairs

INVOLVE is a national advisory group that supports greater public involvement in NHS, public health and social care research. They offer a large range of information and supporting documents that explain PPI in detail. To find out more please go to http://www.invo.org.uk/.

INVOLVE briefing notes for researchers on how to involve members of the public in research.

Cost Calculator allows researchers to calculate the costs of PPI in their research to enter into grants applications.