Sarah Buckland, Director, INVOLVE People Centred Public Health Research

A national advisory group funded by the National Institute for Health Research (NIHR). Established Supporting active public involvement in NHS, public health and social care research What is INVOLVE? How we do it:  INVOLVE Strategy 2012 – 15  Annual work plans  INVOLVE Members  INVOLVE Coordinating Centre

33 members  service users  carers  members of the public  researchers  public involvement specialists  research managers  health and social care practitioners  people from voluntary sector organisations INVOLVE members

Public Involvement Where members of the public are actively involved in research and in research organisations. e.g. involvement in identifying research priorities commenting on research plans and the acceptability of research to the public membership of steering committees undertaking research Public Engagement Where information and knowledge about research is provided and disseminated to the public. e.g. science festivals open to the public with debates and discussions on research open days where members of the public are invited to find out about research using media to inform and raise awareness of research with the public What do we mean by involvement and engagement? invo.org.uk

 Broad democratic principles of citizenship, accountability and transparency.  Public involvement in research can lead to empowerment for people who use health and social care services, providing a route to influencing change and improvement in issues which concern them most.  Public involvement can lead to better quality research that is -  more relevant  accessible and acceptable to participants and  lead to better practical outcomes Why is public involvement important?

 Public involvement and engagement – emphasis on engagement / communicating research findings - terms often used interchangeably  Language and definitions of ‘public’  Not just health interventions – research often involves healthy people who may have less motivation to get actively involved in research Some of the challenges for public involvement in public health research

 Watcome Study – Randomised Controlled Trial of how housing conditions in Torbay affected the health and wellbeing of residents  Born in Bradford Study - birth cohort of 10,000 babies born in 2007, being followed up for 20 years  On the Buses study – public health impact of free public transport for young people in London.  index.html index.html Some examples of public involvement in public health research

Involve people as early as possible Be clear with the people you want to involve Be accessible Resource the involvement Offer training and support Clarify organisational responsibilities Document and record involvement in your research How best to involve the public?

INVOLVE Strategy LEAD across the National Institute for Health Research Build and share the EVIDENCE BASE Develop CAPACITY and CAPABILITY Influence research POLICY and PRACTICE

Leading on public involvement across the NIHR and influencing research policy and practice Supporting NIHR e.g.  Public involvement in research funding decisions  Public involvement in research funded by the NIHR Research  Plain English summaries  NIHR wide approach to Learning and Development  Principles and standards for involvement Influencing policy and practice e.g. Regulation of research e.g. Health Research Authority (HRA) Payment e.g. Payment guidance International e.g. Denmark and Netherlands

Building and sharing the EVIDENCE BASE – e.g. Evidence Library library/ An on line database of 200+ lay summaries of reports on the nature, extent, impact of public involvement. Examples of public involvement User controlled research, social care research, impact on the quality of research, examples of involvement in research design. invoNET A network of 200+ people with a shared interest in researching nature, extent and impact of public involvement in research.

Developing CAPACITY and CAPABILITY – e.g. Sharing knowledge and experience: Responding to enquiries Newsletter and alerts Resources: Briefing Notes for Researchers Public Information Pack (PIP) Training and support for public involvement Involvement cost calculator Databases and maps: Putting it into practice database People in Research database invoDirect

Sarah Buckland, Director People Centred Public Health Research