The following provides introductory text and links for staff new to public involvement.

 

1. INVOLVE’s definition and resources

INVOLVE is the national advisory group that supports public involvement in health and social care research. INVOLVE offers a definition for public involvement in research as:

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;
  • undertaking interviews with research participants.

When using the term ‘public’ we include:

  • patients;
  • potential patients;
  • carers and
  • people who use health and social care services as well as people from organisations that represent people who use services.

Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services.

INVOLVE’s starting point is a series of ten briefing notes for researchers, covering a range of topics from ‘what is involvement’ to ‘how to involve people in research’. Case studies and templates are included. INVOLVE also provides an ‘Evidence Library’ of published research about involvement and resources documenting how involvement has been put into practice.

www.invo.org.uk/resource-centre/resource-for-researchers/

 

2. General introduction to clinical research for staff

UK Clinical Research Facility Network Induction Framework, Version 4, 2016

This document provides an excellent introduction for staff working in clinical research. It is designed so that staff can dip in and out, and select topics relevant to their role and at different levels, depending on prior experience and knowledge.

Theme 12 introduces staff to Patient and Public Involvement in Research (page 30) and is a good starting point for staff with limited time and resource to get an insight into public involvement. Although targeted at staff working within a clinical research facility setting, the document has generic relevance for all staff working in clinical research and is used extensively across NIHR infrastructure and beyond.

 

3. Guide for researchers working with public contributors

This document is produced by the University of Oxford; it offers a comprehensive guide covering many topics a new researcher needs to consider, such as advertising for contributors, developing role descriptions and good practice for running meetings. Some minor aspects are specific to the university (such as contacting their pool of contributors), but the overall advice is highly relevant to any researcher and anyone new to working in public involvement.

www.phc.ox.ac.uk/get-involved/ppi/information-for-researchers/guide-for-researchers-in-working-with-ppi-contributors-17.pdf

 

4. A tool kit approach to public involvement

Cancer Research UK has produced a tool kit using a step by step approach. Aiming to help make patient and public involvement in research a valuable and meaningful activity.

www.cancerresearchuk.org/funding-for-researchers/patient-and-public-involvement-ppi-toolkit-for-researchers

 

5. Useful videos

Health Talk Online has produced online videos and links to researchers’ experiences of public involvement. Ideas of ways to encourage thinking around good practice in PPI work.  It is intended as a reference tool only. There are useful templates to download and links to videos to watch:

www.healthtalk.org/peoples-experiences/medical-research/patient-and-public-involvement-research/topics

 

6. Useful case studies

YouTube has many case study videos that demonstrate how public involvement is put into practice:

www.youtube.com/watch?v=s9wEXxvr218

The above NIHR video leads to others relevant to public involvement. And there is a ‘How to join in’ page on the NIHR website for members of the public:

www.nihr.ac.uk/patients-and-public/opportunities/

 

7. See how some NIHR organisations approach public involvement and engagement

The Central Commissioning Facility (CCF) manages several NIHR infrastructure initiatives.  Every year, each part of the infrastructure provides a progress report. The patient and public involvement and engagement (PPIE) sections of these annual reports provides a brief summary of the progress in implementing PPIE strategies of:

  • Biomedical Research Centres and Biomedical Research Units (BRC/BRUs)
  • Collaborations for Leadership in Applied Health Research and Care (CLAHRCs)
  • Clinical Research Facilities for Experimental Medicine (CRFs)
  • Diagnostic Evidence Co-operatives (DECs)
  • Health Protection Research Units (HPRUs)
  • Healthcare Technology Co-operatives (HTCs)
  • Patient Safety Translational Research Centres (PSTRCs)
  • Research Design Service (RDS)
  • Research Schools

These are a useful source of information and can help to give ideas on public involvement activities, impact and outputs:

www.nihr.ac.uk/about-us/how-we-are-managed/managing-centres/nihr-central-commissioning-facility/ccf-ppi/ppie-annual-reports.htm

 

8. Useful Networks

UK Clinical Research Facilities’ Network provides information to individuals working in research across the UK and Ireland, for the operational delivery and management of experimental medicine studies. This network shares and disseminates good practice, creating a support network for existing and new Clinical Research Facilities, and developing and facilitating relevant projects through its work streams.

If you are responsible for public involvement and have limited resources and support, you are welcome to join the UKCRFN PPI Work Stream – e-mail at:

ukcrf-ppie-working-group@nihr.ac.uk

Learn more about other UKCRFN work streams here: www.ukcrfnetwork.co.uk/

 

invoDIRECT is an INVOLVE directory of networks, groups and organisations that support active public involvement in NHS, public health and social care research. The searchable database allows individuals or networks, groups or organisations to be aware of and make contact with, others who are carrying out similar work:
www.invo.org.uk/communities/invodirect/

 

Shared Learning Group for Involvement is a collection of charities, who aim to encourage shared learning about service user and carer involvement between voluntary sector organisations working in the UK. Its main Shared Learning Group looks at involvement across all areas. It also has a Shared Learning Group on involvement in research:

http://slginvolvement.org.uk/