1. SOCIAL CARE RESEARCH AND NHS RECs Professor Jan Pahl University of Kent Contact: J.M.Pahl@kent.ac.uk

2. AIMS OF THE PRESENTATION 1 Review the context within which social care research takes place 2 Outline progress with implementing research governance in social care 3 Outline current proposals for the ethics review of social care research 4 Consider some issues for members of NHS RECs and invite discussion

3. THE CONTEXT: WHAT DOES ‘SOCIAL CARE’ INCLUDE? Care for vulnerable children Care for adults who are vulnerable because of disabilities, mental health problems or old age Two central government departments: DH and DCSF Two parts of local authorities: adult social services and education departments Voluntary sector Private and commercial sector

4. THE CONTEXT: DIFFERENCES BETWEEN HEALTH AND SOCIAL CARE RESEARCH Differences in terms of: Levels of funding for research Relevant academic disciplines Research methods employed Scale and scope of research Role of service users: ‘experts by experience’ Role of Councils with Social Services Responsibilities (CSSRs) Most social care research has no links with NHS

5. PROGRESS TOWARDS IMPLEMENTING THE RGF IN SOCIAL CARE Baseline surveys 2002 and 2005 Consultation and implementation plan 2004 Consultations with service users 2003-06 Option appraisal on systems for ethics review in social care 2006 Planning group for a system of ethics review 2007

6. PROGRESS TOWARDS IMPLEMENTING THE RGF IN SOCIAL CARE (cont.) Work by the Research Governance in Social Care Advisory Group (RGSCAG) Production of the RGF Resource Pack by Social Services Research Group (SSRG), DH and ADSS Provision of Start-up Grants for research governance in CSSRs by DH 2005-6 Series of regional training workshops for RGF leads, funded by DH, organised by SSRG 2005

7. BASELINE SURVEYS OF RESEARCH GOVERNANCE IN CSSRs Methods: Survey in 2002 and follow-up in 2005 Questionnaires to all CSSRs in England Response rate of 65 per cent Produced both quantitative and qualitative data

8. RESULTS OF 2005 SURVEY OF RESEARCH GOVERNANCE IN CSSRs Half of all CSSRs recorded all research centrally (compared with a third in 2002) In 36 per cent research was subject to review of methods (compared with 8 per cent in 2002) In 39 per cent research was subject to review of ethics (compared with 14 per cent in 2002) Majority of CSSRs planned to extend methods and ethics review to all research by end 2006

9. OPTION APPRAISAL ON A SYSTEM OF ETHICS REVIEW FOR SOCIAL CARE Responses from the social care field opted for a separate, specialist system of ethics review for social care research, within a tiered structure, including national, regional and local levels Responses from the health services opted for a system of ethics review for social care within existing NHS REC structures

10. PLANNING GROUP RECOMMENDATIONS FOR ETHICS REVIEW IN SOCIAL CARE A national social care REC, ‘owned’ by the social care field but located within NRES structures, as a ‘flagged’ committee Regional and local systems for ethics review, based on existing systems in CSSRs Collaborative systems between CSSRs and the NHS, or between CSSRs and universities, drawing on the ESRC recommendations

11. PLANNING GROUP PRINCIPLES FOR ETHICS REVIEW IN SOCIAL CARE Distinctively social care in membership, ethos and operation Equivalent in standing to those in the NHS Covering both adult and children’s care and research in the private and voluntary sectors Receiving proposals via NRES, but mainly from other sources Having an Appointing Authority based in a social care setting, eg SCIE Committed to supporting, not deterring, research activity

12. KEY ELEMENTS IN DEVELOPING ETHICS REVIEW IN SOCIAL CARE The National Research Register for Social Care (NRRSC) located at the Social Care Institute for Excellence (SCIE) The DH Risk Assessment tool to assess the potential risk of particular research projects Continuing liaison with relevant bodies in Scotland and Wales to develop a UK wide approach to ethics review

13. WHEN A SOCIAL CARE RESEARCH PROJECT COMES TO AN NHS REC Be aware of the different context within which social care research takes place Focus on ethics not research methods Fast track ethically uncontentious projects The involvement of service users is important – and their viewpoint can be very different Remember that service users have argued that people have a right to decide for themselves whether they want to take part in research

14. FURTHER INFORMATION For the RGF in Social Care see the DH website: http://www.dh.gov.uk/en/Policyandguidance/R esearchanddevelopment/A-Z/DH_4002132 For the Social Services Research Group see: http://www.ssrg.org.uk/governance/index.asp http://www.ssrg.org.uk/governance/index.asp For the Social Care Institute for Excellence see: http://www.scie.org.uk/ For the Association of Directors of Adult Social Services see: www.adass.org.uk/research.shtmlwww.adass.org.uk/research.shtml