Public involvement in research

Lucy SimonsPublic Involvement Advisor

INVOLVE

Promoting public involvement in NHS, public health and

social care research

www.invo.org.uk

National advisory group. Funded by the Department of Health since 1996.One of the National Institute for Health Research Programmes (NIHR).

Promotes active involvement of the public in NHS, public health and social care research

www.invo.org.uk

INVOLVE

Research carried out ‘with’ or ‘by’ the public rather than ‘to’, ‘about’ or ‘for’

For example:• involvement on steering committees• commenting on design• as joint collaborators

We use the term ‘public’ to include patients, service users, carers, and representatives of people who use services

www.invo.org.uk

• Influencing policy and practice

• Increasing awareness and sharing experiences of others- website (www.invo.org.uk)- newsletters- database of research projects

• Giving advice and guidance- publications- enquiries

• Improving understanding of extent, nature and effects of involvement

- invoNET- Impact study

www.invo.org.uk

The role of INVOLVE

• people who are affected by research should have a say in what and how research is undertaken

• it can improve the quality of the research

• the National Institute for Health Research (NIHR) and the Department of Health support the importance of public involvement

www.invo.org.uk

Why is public involvement important ?

www.invo.org.uk

How are people getting involved in research?

www.invo.org.uk

Levels of involvement

Consultation Collaboration Control

IMPLEMENTATION

IDENTIFYING & PRIORITISING

TOPICS

DESIGNING

ANALYSING & INTERPRETING

COMMISSIONING AND MANAGING

UNDERTAKING RESEARCH DISSEMINATION

MONITORING & EVALUATION

researchcycle

INVOLVENovember 2004

• Improving relevance of research

• Improving quality of research design, methods and findings

• Supporting the communication of research information

www.invo.org.uk

Making a difference to research

•Tokenism

•Finding people to get involved

•Time commitment and resources

•Ensuring accessibility

•Accessing training, mentoring and support

•Rewarding and reimbursing involved people

www.invo.org.uk

Challenges to public involvement

• Research scenario

• What would be the purpose of involving service users in this research? • How would a service user perspective help in developing this proposal?

•How can service users be involved to achieve these aims?•What considerations are there to ensure it is successful?

www.invo.org.uk

Group exercises

Help and supportINVOLVE • website (www.invo.org.uk)• newsletter• research project database• publications• enquiries• building an evidence / knowledge base

Research Design Services• public involvement leads• remit to advise on public involvement

INVOLVE

Website: www.invo.org.uk

Email: admin@invo.org.uk

Telephone: 023 8065 1088