The ReTrain Project: Re habilitation Train ing for people recovering from stroke An example of Patient and Public Invo

1. The ReTrain Project: Rehabilitation Training for people recovering from strokeAn example of Patient and Public Involvement in Research Sarah Dean Peninsula Collaboration for Applied Health Research and Care (PenCLAHRC)

2. Introduction Meet the team Patient and Public Involvement (PPI) Peninsula CLAHRC The stroke research question: ReTrain The South West Stroke Research Network ReTrain User group ReTrain Development work Benefits and Challenges of PPI

3. The ReTrain Team Sarah Dean Leon Poltawski Martin James Vicki Goodwin Sarah Dawkins Anne Forster Andy Gibson Kate Boddy Rod Taylor James Irving Jacqueline Briggs Colin Green John Campbell Richard Siegert William Henley Acknowledgements Peninsula Collaboration for Leadership in Applied Health Research and Care (PenCLAHRC) Stroke Research Network South West Stroke Research Network

4. Patient and Public Involvement (PPI) in Research Position statement: Giving people a say in shaping research agenda Involvement on an equal basis Shift of power balance to allow users to initiate research / work collaboratively Mutual benefit basis, not researcher’s extracting knowledge Ethical principle that public have a right to influence research priorities Proposition: patients are final decision makers in the chain of putting research findings into practice – so PPI increases probability of effective use of research evidence in practice.

5. CLAHRCs PenCLAHRC Implementation Research Stroke rehabilitation (ReTrain) Stroke thrombolysis modelling Behaviour change in obesity Paediatric ward communication training* Social/emotional behaviour in children VTE prevention Falls prevention Preventing childhood obesity Access to psychological therapies

6. Involving the Public in PenCLAHRC

7. The SRN’s are required to ensure that: • 'the views and perspectives of people who have had stroke, their carers and the public are embedded throughout all levels of the Stroke Research Network and all stages of the research process' (Stroke Research Network Strategy 2006). • Patient, Carer & Public Involvement • Keeping up to date with and commenting on network developments via a regular newsletter • Taking part in planning groups for studies/developments • Raising public awareness by helping to plan campaigns/activities • Generating research ideas • Commenting on and helping to disseminate research findings • Helping with information about specific studies in the future

8. Jim and Jacqueline’s Question Jim is 77 years old and had a stroke nine years ago. He was offered the conventional approach to rehabilitation during the first year after his stroke, which he found valuable. However, he feels that the health service then stopped expecting him to improve. Jim was given a leaflet about Action for Rehabilitation from Neurological Injury (ARNI) and decided to find out more. As a result, he suggested to members of the Peninsula Stroke Network Patient Carer & Public Involvement Group the idea of researching the effectiveness of ARNI. Jacqueline Briggs (the Stroke Network Manager) worked with Jim to develop the idea. She met with Andy Gibson of PenCLAHRC and they developed Jim’s thoughts into an outline research question and submitted it to PenCLAHRC. It was adopted by PenCLAHRC and is now called Re-Train. Jim and members of the SW Stroke Network Patient Carer & Public Involvement Group continue to be involved.

9. Action for Rehabilitation from Neurological Injury: ARNI ARNI is an exciting development in the field of stroke rehabilitation: • progressively recovering lost strength, balance and movement by functional task-related practice and stroke-specific resistance training techniques.• designing self-recovery programmes with the aim of self-reliance.ARNI is a registered charity formed in response to the very real demand throughout the UK from stroke survivors, who uniformly state that they are 'stuck in limbo' after coming home from rehab. http://www.arni.uk.com

10. ReTrain Development Work Vicki Goodwin and Sarah Dean MRC Complex Interventions framework: Case studies Outcome measures survey ARNI trainer interviews Clinician interviews Patient and carer focus groups Liaison with pilot service delivery programmes Newly appointed Research Fellow: Leon Poltawski

11. The ReTrain User Group 16 members of the public (patients and carers) User group work: Inaugural meeting August 2010 ReTrain Development work SRN Portfolio Development Opportunity mtg April 2011 Other projects Get newsletters, requests for involvement Evidence Based Practice workshops

12. Benefits of PPI Intended: Research question generation Involvement in research design: rights / success of an intervention Addresses the third gap Knowledge transfer Unintended: Raised expectations Generated skills that may be intrinsically worthwhile: searching for evidence / informing clinical interactions

13. Challenges of PPI Reporting of PPI variable, do not yet know impact of involvement, especially on those who get involved. Raising expectations also means managing disappointment Need for jargon busting Participation v involvement – ethical issues Time & staff resources Tensions between robust design & getting on with it The differing worlds, roles, rules and boundaries of patients, public, NHS, academia and health research.

14. Where we go next… For ReTrain: Development work Grant funding for clinical trial For Stroke research in the SW: Projects identified by the SRN Portfolio Development Opportunity meeting held on 8th April 2011 For PenCLAHRC PPI: User group(s) work Evaluation of PPI Model of user involvement

15. Thank you Sarah Dean: sarah.dean@pms.ac.uk Leon Poltawski: leon.poltawski@pcmd.ac.uk Andy Gibson:andy.gibson@pms.ac.uk SW Stroke Research Network:http://southwest.uksrn.ac.uk/ PenCLAHRC: http://clahrc-peninsula.nihr.ac.uk/