User Involvement: Who is engaged? What does research tell us about involvement?

1. User Involvement: Who is engaged?What does research tell us about involvement? Rosemary Chesson Health Services Research Group The Robert Gordon University

3. Terminology and definitions

4. Research ‘ • designed to provide new knowledge • it is generalisable • findings open to critical examination & accessible to all ’ Telford et al, 2002

5. Involvement ‘refers to the appropriate, active participation of all groups (e.g patients, carers, local community and wider public) as partners in their own care and in the planning, monitoring and development of health services.’ Kelson, 1997

6. Arnstein’s ladder of participation Partnership Placation Consultation Informing

7. What does research tell us? • variable across countries & UK • variable between services • variable between diff care/client groups • not straightforward to do • resources needed

14. Few evaluations of the effects of involvement

15. Little evidence to support claims of • Improved treatment outcomes • Leads to development of new / alternative approaches • Increased sense of ownership of services

16. It is ethically desirable

17. But requires a cultural change

18. On the part of... • The public • Staff

20. ‘Its about them doing what they are told, when they’re told and that’s it’ ‘It is difficult when we’ve got this duty of care’

22. Recommendations • Recognise need for public education and support • Need to implement & monitor staff development strategies • Include evaluation as part of user involvement • Promote dissemination of research on UI