Involving people with stroke in stroke research

Nina Fudge

Chris McKevitt

Stroke Research Patients and Family Group

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?

Stroke

• Leading cause of death

• Leading cause of adult disability

• Inadequacies in stroke care

• Inadequacies in research funding

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)

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

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

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

Activities/output

• Newsletter

• Consultation with stroke researchers

• User identified research

• Campaigning group - raising awareness of stroke

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

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?

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?

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

Who takes part?

• Not all members of the group actively took part in the research

• Research isn’t primary motivation to come to meetings

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

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.

Acknowledgements

• Members of the Stroke Research Patients and Family Group

• Stanley Thomas Johnson Foundation

• UK Department of Health