Response from research in practice to

The Implementation Plan for the Recommendations of the Report of the Ad Hoc Advisory Group on the Operation of NHS Research Ethics Committees

Introduction

research in practice welcomes the opportunity to participate in the Central Office for Research Ethics Committees (COREC) consultative exercise on implementing the recommendations of the Report of the Ad Hoc Advisory Group on the Operation of NHS Research Ethics Committees. We appreciate and are supportive of the National Patient Safety Agency’s aim of facilitating ethical research by improving the operation of National Health Service (NHS) Research Ethics Committees (REC).  research in practice  actively supports a network of 100 public and voluntary sector agencies that are striving to use an evidence informed approach to improve services and outcomes for children and families who have additional needs. The following comments are informed by our partnership’s knowledge and experience of working in an evidence informed way, developed over the last nine years of intensive work. Where it is appropriate, we have identified our comments in relation to specific implementation plans.
 
1. We feel that greater attention might and should have been paid to social care research in the document. The setting up in recent years of the Social Care Institute of Excellence (SCIE), with its broad remit for supporting research access and utilization, the recent National Seminar on Social Care Research Capacity (Social Care Workforce Research Unit, King’s College London), the growing awareness in Councils with Social Service Responsibilities (CSSRs) of the requirement to implement the Research Governance Framework (RGF), the role of the Social Services Research Group (SSRG) in facilitating this, and the willingness of local agencies to network and share best practice (for example, the network Resource Bank on the research in practice website, which incorporates a RG page including a range of resources developed by agencies available to download and a database of lead contacts, and groups such as Research in Social Services Trent, RISST) – all these initiatives are evidence of the expanding knowledge and experience of research within social care. A much greater amount of research is being done by practitioners as part of their PQ work and the Baseline Assessment Survey of CSSRs undertaken by Jan Pahl reveals that over 65% of all research in CSSRs is now subject to ethical and scientific review.   

2. Specifically, we feel that the interface between social care and government departments, local government and non-governmental organisations merits greater attention in the document. The government agenda for research in children and families social care in the aftermath of Every Child Matters is developing and widening, bringing different disciplines (for example, social care, health and education) closer together. Consequently, the changing landscape in children’s services has given rise to new, sometimes ‘hybrid’ roles and necessitates greater collaboration across professions. ‘Social care research’ may not refer exclusively to research undertaken within children’s departments but may also involve health trusts and others involved in the ‘team around the child’. As partnership working between children’s departments, health and education progresses, for example, in Children’s Trusts, it is inevitable that the boundaries will become more blurred.

It is still unclear whether the NHS REC would have the capacity, expertise or required familiarity to review social care research projects, including those that cross-cut other disciplines. The complexity of the situation is obviously compounded by the recent shift in ministerial responsibility for children from the DH to the Department for Education and Skills.      

3. Proportionality of Review  (4.1) It is important to differentiate between research that is potentially low risk and that which is high risk in deciding on the appropriate level of review. Whoever conducts research, it should be of the highest standard.  Social care students, for example, need to engage in practical research as part of the learning process and it is essential that their research is as ethical as that of someone who is more experienced. We are concerned that the National Research Ethics Advisors should be given sufficient guidance and training on the assessment of risk and proportionality. We also note that a number of local authorities already have considerable experience of using the Risk Assessment Matrix (developed by the SSRG in conjunction with the DH) and we would commend this approach.

4. Triage system for Filtering (4.1.2) Although we welcome the moves to reconfigure the REC system as a more agile research ethics service, we are concerned that research proposals may be ‘filtered away’ from ethical review by committees.  It is important that the type of research should be considered in conjunction with an individual researcher’s awareness of risk and the factors that  may have been incorporated to minimise any potential risk. 

5. Membership data (4.5) We welcome COREC’s proposal to monitor and work on data regarding ethnic background and gender representation on RECs. However, we feel that the problems of involving service users and carers in the process of review of individual projects is not sufficiently recognized in the consultation document. Issues remain surrounding the recruitment and training of those individuals who would be involved in committees or panels; these include needs around the methodologies used in social care research and the different contexts of health and social care research. Involving service users and frontline workers from diverse backgrounds is essential, for if these two groups are to be at the heart of service delivery and review then considerable effort needs to be expended in engaging them with the findings and implications of research. There are specific problems and issues surrounding the involvement of families, children and young people that will require particular thought.

6.  Costing for the NHS REC system (4.6.8) Social care research has meagre funding, and it is imperative that all additional costs of ethical review be fully funded as an addition to current research resources.

7. Proposed restructuring (4.6) Finally, we would recommend that COREC collaborate with other organizations that are also involved in drawing up and restructuring ethical review systems, such as the Economic and Social Research Council, the British Association of Social Work, the British Sociological Association, and university ethics systems. 

Conclusion

We urged the government in the Ethics Review of Social Care Research in December 2004 ‘to adopt an ethics review system that is specifically tailored to social care, rather than attempting to utilise systems already developed by the Central Office for Research Ethics Committees or attempting to combine the review of social care research with that of health services and public health research. We do not believe that the National Health Service (NHS) Research Ethics Committees (RECs) are the appropriate forums for the ethical review of social care research’.

The present implementation plans reveal the difficulties of incorporating research generated from a social care environment into the NHS REC system, not least by the lack of adequate reference to social care in the consultation document. We feel that what is required in developing an ethical review system which is truly cognisant of social care research is the greater involvement of relevant stakeholders, including those from CSSRs, who are familiar with the social care environment and the approaches, methodologies and partnerships that are presently being forged and who are capable of reflecting the evidence base.

research in practice was established in 1996 as an initiative of the Association of Directors of Social Services (ADSS) and is the largest children and families research implementation project in England and Wales. It is a department of The Dartington Hall Trust run in collaboration with the ADSS, The University of Sheffield and a network of over 100 public and voluntary sector agencies in the UK that are striving to use an evidence informed approach to improve services and outcomes for children and families who have additional needs.

research in practice ’s mission is to promote positive outcomes for children and families through the use of research evidence.

research in practice ’s purpose is to identify effective methods of understanding and using research by providing services to a collaborative network of committed agencies.

More details can be found on our website

Contact for this response:

Margaret Casey, Research Officer,
research in practice , Department of Sociological Studies, University of Sheffield, 343 Fulwood Road, Sheffield S10 3BQ m.casey@sheffield.ac.uk  0114 222 6464

Director: Celia Atherton, research in practice , Blacklers, Park Road, Dartington, Totnes, Devon TQ9 6EQ celia@rip.org.uk  01803 867 692