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 Inner city London 300 people with first ever stroke per year About 4000 recruited to date

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