1. 1 Developing an effective system of service user and carer involvement in research School of Health and Social Care University of the West of England Jane Dalrymple, David Evans, Ruth Sayers, Pat Taylor, Julian Wood July 2008

2. 2 Background Service user and carer involvement now central to research and development strategy in health and social care nationally Service user and carer involvement now central to research and development strategy in health and social care nationally Requirement by health and social care research funders, but evidence that NHS researchers still struggle on involvement Requirement by health and social care research funders, but evidence that NHS researchers still struggle on involvement Growing community of service users and carers involved in research Growing community of service users and carers involved in research Growing evidence that user involvement / collaboration improves quality, depth and utility of research Growing evidence that user involvement / collaboration improves quality, depth and utility of research Increasing service user and carer involvement in School of Health and Social Care research but not systematic, or supported effectively Increasing service user and carer involvement in School of Health and Social Care research but not systematic, or supported effectively Timely to review and develop our Faculty strategy for involvement Timely to review and develop our Faculty strategy for involvement Funded by Faculty small research grant scheme Funded by Faculty small research grant scheme

3. 3 Aim of project To contribute to developing an effective research culture in the School of Health and Social Care where service users and carers are involved as valued partners in the research process To contribute to developing an effective research culture in the School of Health and Social Care where service users and carers are involved as valued partners in the research process

4. 4 Project team Initiated by two academic researchers Initiated by two academic researchers Two service user researchers recruited, one experienced and one novice Two service user researchers recruited, one experienced and one novice One additional academic researcher joined team One additional academic researcher joined team

5. 5 Methods Literature review Literature review Two focus groups: academics / users Two focus groups: academics / users Email survey of faculty research staff Email survey of faculty research staff Reflective diaries and discussion Reflective diaries and discussion Workshop for staff developement attended by user researchers Workshop for staff developement attended by user researchers

6. 6 Literature review Substantial literature on the involvement of service users and carers in research Substantial literature on the involvement of service users and carers in research Several published guidelines on best practice for involving service users in research (e.g. SURGE) Several published guidelines on best practice for involving service users in research (e.g. SURGE) Dilemmas regarding terminology (e.g. “users”) Dilemmas regarding terminology (e.g. “users”) Many different levels of involvement Many different levels of involvement Number of factors that help and hinder research Number of factors that help and hinder research Issues about how to involve service users/carers and who to involve Issues about how to involve service users/carers and who to involve Key factors for successful involvement include support and training Key factors for successful involvement include support and training The issue of payment is significant The issue of payment is significant

7. 7 Focus groups Great diversity in understanding of nature and meaning of service user and carer involvement in research Great diversity in understanding of nature and meaning of service user and carer involvement in research Recognition of different levels of involvement Recognition of different levels of involvement Importance of understanding the process of involvement Importance of understanding the process of involvement The early process of engagement is particularly critical as the research is being formulated The early process of engagement is particularly critical as the research is being formulated Key factors for successful involvement Key factors for successful involvement How research process itself (i.e. NHS ethical review) influences involvement How research process itself (i.e. NHS ethical review) influences involvement

8. 8 Staff survey Low level of response (25%) but high levels of significant involvement by those who did respond Low level of response (25%) but high levels of significant involvement by those who did respond 21% (n=17) involved service users and carers in project teams 21% (n=17) involved service users and carers in project teams 15% (n=12) involved service users and cares as co-authors 15% (n=12) involved service users and cares as co-authors Most common barrier identified was ethical requirements (38%, n=30) Most common barrier identified was ethical requirements (38%, n=30) 13% (n=10) had experienced no barriers 13% (n=10) had experienced no barriers Policy guidance from Faculty most common support need identified (50%, n=40) Policy guidance from Faculty most common support need identified (50%, n=40) Qualitative comments emphasised value and utility of service user and carer involvement Qualitative comments emphasised value and utility of service user and carer involvement

9. 9 Reflexive process - barriers Service users were not part of the initial application for funding – so felt that they were not part of the process from the beginning Service users were not part of the initial application for funding – so felt that they were not part of the process from the beginning University structures did not easily accommodate service user involvement (applying for funding, the ethics process) University structures did not easily accommodate service user involvement (applying for funding, the ethics process) Aims of the project may have been too ambitious for the level of funding Aims of the project may have been too ambitious for the level of funding Lack of induction and/or initial team building had serious consequences & led to misunderstandings Lack of induction and/or initial team building had serious consequences & led to misunderstandings The service user researchers were unclear about their role The service user researchers were unclear about their role Short deadlines were not helpful, no contingency plans Short deadlines were not helpful, no contingency plans Effective communication channels were not established Effective communication channels were not established Inadequate preparation for working with service user researchers Inadequate preparation for working with service user researchers Insufficient support for users available during the process Insufficient support for users available during the process

10. 10 Reflexive process – facilitating factors Regular meetings of the research team enabled assessment/re-assessment of the project as an ongoing process Regular meetings of the research team enabled assessment/re-assessment of the project as an ongoing process All the researchers were flexible and accommodating to changing availability & focus All the researchers were flexible and accommodating to changing availability & focus The service user researchers felt able to ask questions, and felt valued The service user researchers felt able to ask questions, and felt valued The views and input of service user researchers were valued by the academic researchers The views and input of service user researchers were valued by the academic researchers The academic researchers were honest about the shortcomings of the project and prepared to discuss issues as they arose throughout the course of the research process The academic researchers were honest about the shortcomings of the project and prepared to discuss issues as they arose throughout the course of the research process Everyone valued the project as a chance to learn. Everyone valued the project as a chance to learn.

11. 11 Learning from reflection If the service user researchers had been involved in the process from the beginning, we would have been able to develop constructive working relations much more quickly If the service user researchers had been involved in the process from the beginning, we would have been able to develop constructive working relations much more quickly We should have prioritised building our team so that all of us could explore and clarify roles and expectations, and feel more comfortable about working with each other We should have prioritised building our team so that all of us could explore and clarify roles and expectations, and feel more comfortable about working with each other All members of the team needed to be able to negotiate their own levels of involvement in the project, and to allow for contingencies All members of the team needed to be able to negotiate their own levels of involvement in the project, and to allow for contingencies We were unrealistic about working as ‘equals’- given different cultural starting points & power We were unrealistic about working as ‘equals’- given different cultural starting points & power

12. 12 Key factors for successful involvement Strategic policy and personal commitment Strategic policy and personal commitment Accessible guidance and support available Accessible guidance and support available Early and continued engagement crucial Early and continued engagement crucial Clarity on the project and roles, time commitments, etc Clarity on the project and roles, time commitments, etc Accessibility of project/materials Accessibility of project/materials Recognising diversity of service users Recognising diversity of service users Need to sort practicalities – access, payment, benefits, etc Need to sort practicalities – access, payment, benefits, etc Training, support, team building for both academic and service user researchers Training, support, team building for both academic and service user researchers

13. 13 Recommendations Form a steering group of academic and service user / carer researchers to take project forward Form a steering group of academic and service user / carer researchers to take project forward Establish Faculty Panel of service users and carers interested in becoming partners in research Establish Faculty Panel of service users and carers interested in becoming partners in research Develop a database of interests and expertise of panel members Develop a database of interests and expertise of panel members Identify benefits in kind and levels of payment for service users and carer involvement Identify benefits in kind and levels of payment for service users and carer involvement Develop & publicise a programme of opportunities for academic and service user\carer researchers to meet and establish working relationships (e.g. at Faculty Research Seminars) Develop & publicise a programme of opportunities for academic and service user\carer researchers to meet and establish working relationships (e.g. at Faculty Research Seminars) Build SU & C Involvement into research budgets : Credit union system established to fund service user and carer involvement while developing new research proposals Build SU & C Involvement into research budgets : Credit union system established to fund service user and carer involvement while developing new research proposals Establish a Co-ordinator post to promote & support plan Establish a Co-ordinator post to promote & support plan

14. 14 Next steps Report and recommendations have been discussed and supported by the Faculty Research & Knowledge Exchange Committee Report and recommendations have been discussed and supported by the Faculty Research & Knowledge Exchange Committee The team have been given 15K towards the development of the recommendations The team have been given 15K towards the development of the recommendations Action plan agreed to develop User / Carer Panel within next 12 months Action plan agreed to develop User / Carer Panel within next 12 months Initial steps taken to form a Steering Group with representatives from four main research centres, the research team plus four service user\carer researchers, and Dean of Research Initial steps taken to form a Steering Group with representatives from four main research centres, the research team plus four service user\carer researchers, and Dean of Research

15. 15 Contact details Pat Taylor Pat Taylor patricia.taylor@uwe.ac.uk patricia.taylor@uwe.ac.ukatricia.taylor@uwe.ac.uk Ruth Sayers Ruth Sayers ruthsayers@yahoo.co.uk ruthsayers@yahoo.co.uk ruthsayers@yahoo.co.uk If you want a copy of the main report please contact Pat If you want a copy of the main report please contact Pat