What does stroke research look like now?

Patients, carers and researchers reflect on three years of involvement

Elizabeth Mitchell

Christopher McKevitt

Stroke Research Patients & Family Group

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Outline • About the King’s College London Stroke

Research Patients and Family Group

• What’s worked well and not so well?• perspectives of Group members

• perspectives of stroke researchers

• What are we achieving?

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Kings’ College London Stroke Research Programme

• Epidemiology

• Health service quality

• Health service development

• Social science studies of patient, carer, provider experience

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The South London Stroke Register

• 1995 -

• Inner city London

• 300 people with first ever stroke per year

• About 4000 recruited to date

SouthwarkLambeth

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South London Stroke Register Study Area

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Stroke Research Patients & Family Group

• 2005

• Stroke survivors and family members

• Most take part in SLSR

• KCL stroke researchers

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Activities

•6 weekly meetings

•Pilot study - costs of stroke for individuals

and family members

•Redesigned study information booklet & consent form

•Biannual research newsletter

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What do Group members get out of taking part?

• Social aspect

• Information from others with experience of stroke

• An atmosphere of acceptance

• Knowledge and confidence

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What has the Group achieved?

• We know what services we should be aiming to achieve

• Our expectations have grown as a result of exchange of ideas in the group

• We are encouraged to think bigger about the power we have to influence things

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What do researchers think the Group is for?

• have established an on-going

relationship with stroke service users

• improves your research

• are fulfilling duty to engage with service users/public

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What has worked well?

• The Group has developed into a stable network of people

• Pilot study of costs of stroke

• Group members are unpaid volunteers• keeps the group informal • gives you the freedom to say what you

think

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Some problems and questions

• Need to use the meetings not just to talk about “What happened to me” but what we as a group can collectively do about it

• More training to become more “professional” in our approach

• As a group we need to know a little more about the practicalities of research so our contribution can be more effective

• Lack of feedback

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Some problems and questions

• Some researchers are nervous about speaking to stroke service users in our meetings, where they are not in control: need encouragement & support

• Need to use the meetings not just to talk about what’s happened to me but what we as a group can collectively do about it

• Funding – user involvement levy

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Conclusions

• Stroke researchers’ ideas about involving service

users are evolving

• The group is evolving

• Overlapping purposes

• Evaluation of our experience