C Marc Taylor Department of Health marc.taylor@dh.gsi.uk

1. Ethnicity and health research:the Research Governance Framework and the new health research strategy C Marc Taylor Department of Health marc.taylor@dh.gsi.gov.uk Research and Development: Knowledge for Health and Social Care

2. DH research governance Department of Health Research Governance Framework for Health and Social Care • 1st edition 2001: guidance • 2nd edition 2005: a quality standard for health care • Covers R&D in health and social care settings • Includes studies when access to research populations is via NHS or CSSR or agencies contracted to them Research and Development: Knowledge for Health and Social Care

3. RGF for health and social care Ministry of Health Act 1919 2. It shall be the duty of the Minister, in the exercise and performance of any powers and duties transferred to or conferred on him by or in pursuance of this Act, to take all such steps as may be desirable to secure the preparation, effective carrying out and co-ordination of measures conducive to the health of the people … including measures for the prevention and cure of diseases, the avoidance of fraud in connection with alleged remedies therefore, the treatment of physical and mental defects, the treatment and cure of the blind, the initiation and direction of research, the collection, preparation, publication and dissemination of information and statistics relating thereto, and the training of persons for health services. Research Governance Framework, 2005 Proper governance of research is essential to ensure that the public can have confidence in, and benefit from, quality research in health  and social care. The public has a right to expect high scientific, ethical and financial standards, transparent decision making processes, clear allocation of responsibilities and robust monitoring arrangements. The same principles apply across health and social care research, but the way in which the relevant standards are achieved  will differ according to the research type, context and method. For example, compared with much research in the NHS, research in social care differs in scale, volume and funding, as well as in the mix of stakeholders, the organisational context and the range of academic disciplines. The arrangements and mechanisms for implementing  research governance in social care research are likely to have features that are  particular to social care. Research and Development: Knowledge for Health and Social Care

4. For R&D in the NHS RGF published 2001 Local implementation plans 2002 to 2004 National Standards, Local Action, 2004 Research governance a health care standard from April 2005 For R&D in Social Care Separate implementation plan Consultation 2003 Published 2004 Implementation Research and Development: Knowledge for Health and Social Care

5. 2.2.7 Research, and those pursuing it, should respect the diversity of human society and conditions  and the multicultural nature of society.  Whenever relevant, it should take account of  age, disability, gender, sexual orientation,  race, culture and religion in its design, undertaking, and reporting.  The body of research evidence available to policy makers should reflect  the diversity of the population. Research governance and ethnicity Research and Development: Knowledge for Health and Social Care

6. Vision: to improve the health and wealth of the nation through research “To create a health research system in which the NHS supports outstanding individuals, working in world-class facilities, conducting leading-edge research, focused on the needs of patients and the public.” Strategic goals Establish NHS as a world-class centre of research excellence Support research professionals Commission research Manage research and governance Use resources well New health research strategy Research and Development: Knowledge for Health and Social Care

7. NIHR Research and Development: Knowledge for Health and Social Care

8. Best Research for Best Health A vibrant efficient research environment that commands public confidence and protects research participants, through World-class networks for R&D management and governance Action to simplify processes that use research time Governance, advice, ethics Do only once in a single place, whatever does not have to be done in many places Maximise the joint use of standardised systems and processes Support local decisions with national standards, templates and datasets Give active support to high quality research Aims for R&D management and governance Research and Development: Knowledge for Health and Social Care

9. Expert support, joined-up systems • Research passports • Networked expert centres, each health economy • National advice service • Unified IT systems: • Input information once • Populate ethics and NHS R&D applications, NRR • Published papers, repository • NIHR web site, portal to information services Research and Development: Knowledge for Health and Social Care

10. www.dh.gov.uk C Marc Taylor Department of Health marc.taylor@dh.gsi.gov.uk Research and Development: Knowledge for Health and Social Care

11. Ethnicity and health research:operational issues Christine McGuire Department of Health christine.mcguire@dh.gsi.gov.uk Research and Development: Knowledge for Health and Social Care

12. Examples Guidelines for commissioners (Policy Research Programme) Supporting (potential) contractors Content Research and Development: Knowledge for Health and Social Care

13. DH oversees a range of R&D programmes. Differences in: - Priority setting - Commissioning processes Staffing Small number of core staff In-house expertise Little scope for hands on involvement with projects DH as a funder of R&D Research and Development: Knowledge for Health and Social Care

14. Policy Research Programme - Covers all DH business - Range of methods - Range of policy purposes Difficulty in developing absolute “rules” → guidelines or prompt list Example 1-Commissioning guidelines Research and Development: Knowledge for Health and Social Care

15. Defining the questions Tendering processes Assessment of applications Selection processes Advice to successful applicants Handling issues Example 1-Commissioning guidelines Research and Development: Knowledge for Health and Social Care

16. Context Large number of contractors Range of skills and experience Aim of mainstreaming as well as specific commissioning Example 2 -Support for (potential) contractors Research and Development: Knowledge for Health and Social Care

17. Book of expert papers Edited by James Nazroo Covering range of methodologies Aimed at specialist and non-specialist audience. Example 2 -Support for (potential) contractors Research and Development: Knowledge for Health and Social Care

18. Covers: Demography Theoretical issues Engaging communities Interviewer matching Qualitative research Surveys Evaluation Secondary analysis Example 2 -Support for (potential) contractors Research and Development: Knowledge for Health and Social Care

19. www.dh.gov.uk Christine McGuire Department of Health christine.mcguire@dh.gsi.gov.uk Research and Development: Knowledge for Health and Social Care