1. Involving people with stroke in stroke research Nina Fudge Chris McKevitt Stroke Research Patients and Family Group

2. What is the talk about? How we involved people with stroke in stroke research What different perspective can people with stroke bring to stroke research? What are the challenges and implications for researchers for involving people in research?

3. Stroke Leading cause of death Leading cause of adult disability Inadequacies in stroke care Inadequacies in research funding

4. User involvement in stroke research Few examples in stroke research User involvement in the design of clinical trials to test new treatments (Koops & Lindley 2002 BMJ; Ali et al 2006 Stroke) User involvement in research to assess general public’s knowledge and awareness of stroke (Morgan et al 2005 Family Practice)

5. Stroke Research in South London Multi ethnic population Area of high deprivation 1995 South London Stroke Register Data collected at time of stroke, 3 months,12 months, annually Data: clinical, socio- demographic, service use, stroke impact

6. Stroke research questions How many strokes? What kinds of strokes? What happens to people who have stroke over time? What care do people need? How good is the care? Develop and evaluate new ways of providing care

7. Stroke Research Patients and Family Group Register participants and relatives 25 people, 15 attend meetings Initial aims –tell people on the register about stroke research –listen to their ideas and views about stroke research –find out how we could work together

8. Activities/output Newsletter Consultation with stroke researchers User identified research Campaigning group - raising awareness of stroke

9. Having a stroke: what does it cost individuals and families?

10. Background and aims of research Health economics literature focuses on costs to state, national health service. National Audit Office report: £7 billion What costs are associated with having a stroke? What sources of assistance do people turn to? What assistance do they manage to get?

11. Planning the research Dilemma: maintain engagement AND wait for funding Pilot study to explore the research Methodological issues: How do we collect robust data on costs incurred?

12. Guided conversations - findings Extra expenses depended on age and stroke severity What kinds of extra expenses? Adaptations to home Furniture Time off work Food and supplements Complementary therapies Clothing Transport

13. Who takes part? Not all members of the group actively took part in the research Research isn’t primary motivation to come to meetings

14. Researcher fears? Questioned the ‘quality’ of the research project Assumed involving users would lead to ‘biased’ research Concerned about which journals would want to publish the study

15. Summary People with stroke can be involved in identifying, planning and undertaking research in collaboration with researchers Challenges for user involvement in research –Is the research timetable compatible with user involvement? –How do we overcome the reservations of some researchers? –The promotion of user involvement by research bodies and governments needs to take into account the realities of the research environment.

16. Acknowledgements Members of the Stroke Research Patients and Family Group Stanley Thomas Johnson Foundation UK Department of Health