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Elizabeth Mitchell Christopher McKevitt Stroke Research Patients & Family Group

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. Outline. About the King’s College London Stroke Research Patients and Family Group

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Elizabeth Mitchell Christopher McKevitt Stroke Research Patients & Family Group

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  1. 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

  2. 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?

  3. Kings’ College London Stroke Research Programme • Epidemiology • Health service quality • Health service development • Social science studies of patient, carer, provider experience

  4. The South London Stroke Register • 1995 - • Inner city London • 300 people with first ever stroke per year • About 4000 recruited to date

  5. Southwark Lambeth South London Stroke Register Study Area

  6. Stroke Research Patients & Family Group • 2005 • Stroke survivors and family members • Most take part in SLSR • KCL stroke researchers

  7. Activities • 6 weekly meetings • Pilot study - costs of stroke for individuals and family members • Redesigned study information booklet & consent form • Biannual research newsletter

  8. 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

  9. 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

  10. 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

  11. 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

  12. 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

  13. 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

  14. Conclusions • Stroke researchers’ ideas about involving service users are evolving • The group is evolving • Overlapping purposes • Evaluation of our experience

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