1. What is public involvement in research all about? Sarah Buckland Director INVOLVE sbuckland@invo.org.uk www.invo.org.uk SURF Workshop February 2008

2. What do we mean by research? INVOLVE Research is a way of gaining new knowledge There are many different types of research We all use research skills in our daily lives Research helps to improve treatments and services.

3. Who do we mean by the “public”? Patients and potential patients Informal carers, parents and guardians People who use health and social care services Disabled people Organisations and communities representing the interests of people who use health and social care services Potential recipients of health promotion and public health programmes INVOLVE INVOLVE

4. What do we mean by “involvement”? Active participation in research Not as participants in Research Consultation, collaboration or user controlled INVOLVE INVOLVE

5. How are people getting involved? - becoming members of advisory groups e.g. advising on what research should be funded advising on research projects - commenting on or contributing to written documents e.g. peer reviewing research applications commenting on information sheets - collecting information or data e.g. interviewing - analysing research findings - writing up and sharing the findings of research - managing research projects INVOLVE INVOLVE

6. Some examples …. Research for Patient Benefit Programme Two members of the public sit on each of the 10 regional panels assessing research applications Peer review research applications Influencing which projects are funded INVOLVE

7. Some examples …. PRISM Trial (Langston et al, 2005) Advised on design and undertaking of research Improved patient leaflets Assisted in recruitment of participants INVOLVE

8. Some examples …. Arthritis and Rheumatism research (Hewlett et al, August 2006) Raised issues of importance to patients Advised on reasons for low recruitment Researchers gained greater understanding of rheumatoid arthritis and its impact INVOLVE

9. Some examples …. Breast cancer trial – (Marsden and Bradburn, 2004) Contributed to priorities for final trial design Highlighted lack of information about breast cancer and Hormone Replacement Therapy in general Improved quality of consent process INVOLVE

10. So why get involved So why get involved? INVOLVE You can help: identify what research is important to you and others like you influence the way research is planned and carried out improve the experience for people taking part in research let people know about the findings of research INVOLVE

11. Some things to consider INVOLVE Role descriptions / expectations Level of commitment required Commitment by researchers Support and training available Payment and reimbursement for expenses

12. INVOLVE INVOLVE National advisory group. Funded by the Department of Health, since 1996. Aim to promote and support active involvement of the public in health and social care research.

13. How can we help? Website www.invo.org.uk Newsletter Publications Mailing list Contact us: Tel: 02380 651088 Email: admin@invo.org.uk INVOLVE

14. Sarah Buckland Director INVOLVE sbuckland@invo.org.uk www.invo.org.uk