What topics should research address? Involving service users and adding value to health research Priorities in Healthcare Conference 2016

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1 What topics should research address? Involving service users and adding value to health research Priorities in Healthcare Conference 2016

2 Introduction Avoiding waste in health research Mismatched research agendas The James Lind Alliance The Palliative and end of life care Priority Setting Partnership The National Institute for Health Research: adding value in research Q&A

3 Waste in health research - the current picture & how to add value International Society on Priorities in Health Care Sandy Oliver 9 September 2016

4 Acknowledgements How to increase value and reduce waste when research priorities are set. The Lancet 382: Iain Chalmers, health services researcher Michael B Bracken, epidemiologist Benjamin Djulbegovic, oncologist, methodologist Silvio Garattini, clinical pharmacologist Jonathan Grant, science policy analyst Metin Gulmezoglu, clinical trialist David Howells, preclinical animal researcher John PA Ioannidis, methodologist, bibliometrician Sandy Oliver, social scientist

5 Contents 1 Research barriers to good priority setting for health services 2 (Un)important research questions 3 Mapping out what we already know 4 Conclusions: priority setting wisely

6 Section 1: Research barriers to good health care priority setting

7 Increasing value and reducing waste in biomedical research. Lancet series, 8 Jan 2014 Unbiased and usable reports? Over 30% of trial interventions not sufficiently described Over 50% of planned study outcomes not reported Most new research not interpreted in the context of systematic assessment of other relevant evidence Research waste

8 Increasing value and reducing waste in biomedical research. Lancet series, 8 Jan 2014 Accessible, full research reports? Unbiased and usable reports? Over 50% of studies never published in full Biased underreporting of studies with disappointing results Biased reporting of data within studies Over 30% of trial interventions not sufficiently described Over 50% of planned study outcomes not reported Most new research not interpreted in the context of systematic assessment of other relevant evidence Research waste

9 Increasing value and reducing waste in biomedical research. Lancet series, 8 Jan 2014 Efficient research regulation and delivery? Accessible, full research reports? Unbiased and usable reports? Hyper-regulation of research Inefficient delivery of research Poor re-use of data Failure to promote evaluative research as an integral element of good clinical practice Over 50% of studies never published in full Biased underreporting of studies with disappointing results Biased reporting of data within studies Over 30% of trial interventions not sufficiently described Over 50% of planned study outcomes not reported Most new research not interpreted in the context of systematic assessment of other relevant evidence Research waste

10 Increasing value and reducing waste in biomedical research. Lancet series, 8 Jan 2014 Appropriate research design, conduct and analysis? Efficient research regulation and delivery? Accessible, full research reports? Unbiased and usable reports? Over 50% of studies fail to take adequate steps to reduce biases Studies with inadequate statistical power Inadequate replication of initial observations Hyper-regulation of research Inefficient delivery of research Poor re-use of data Failure to promote evaluative research as an integral element of good clinical practice Over 50% of studies never published in full Biased underreporting of studies with disappointing results Biased reporting of data within studies Over 30% of trial interventions not sufficiently described Over 50% of planned study outcomes not reported Most new research not interpreted in the context of systematic assessment of other relevant evidence Research waste

11 Increasing value and reducing waste in biomedical research. Lancet series, 8 Jan 2014 Questions relevant to users of research? Appropriate research design, conduct and analysis? Efficient research regulation and delivery? Accessible, full research reports? Unbiased and usable reports? Low priority questions addressed Important outcomes not assessed Over 50% studies designed without reference to systematic reviews of existing evidence Over 50% of studies fail to take adequate steps to reduce biases Studies with inadequate statistical power Inadequate replication of initial observations Hyper-regulation of research Inefficient delivery of research Poor re-use of data Failure to promote evaluative research as an integral element of good clinical practice Over 50% of studies never published in full Biased underreporting of studies with disappointing results Biased reporting of data within studies Over 30% of trial interventions not sufficiently described Over 50% of planned study outcomes not reported Most new research not interpreted in the context of systematic assessment of other relevant evidence Research waste

12 Increasing value and reducing waste in biomedical research. Lancet series, 8 Jan 2014 Questions relevant to users of research? Appropriate research design, conduct and analysis? Efficient research regulation and delivery? Accessible, full research reports? Unbiased and usable reports? Low priority questions addressed Important outcomes not assessed Over 50% studies designed without reference to systematic reviews of existing evidence Over 50% of studies fail to take adequate steps to reduce biases Studies with inadequate statistical power Inadequate replication of initial observations Hyper-regulation of research Inefficient delivery of research Poor re-use of data Failure to promote evaluative research as an integral element of good clinical practice Over 50% of studies never published in full Biased underreporting of studies with disappointing results Biased reporting of data within studies Over 30% of trial interventions not sufficiently described Over 50% of planned study outcomes not reported Most new research not interpreted in the context of systematic assessment of other relevant evidence Research waste

13 Section 2: (Un)important research questions

14 Low priority questions addressed in research on treatments for osteoarthritis of the knee Tallon, Chard and Dieppe. Lancet, 2000.

15 Waste resulting from ignoring outcomes of importance to patients Priority treatment outcome from a survey of patients with rheumatoid arthritis was not pain It was fatigue

16 Redundant clinical research

17 leaving key questions unaddressed

18 Redundant epidemiological research Cumulative odds ratios for front versus non-front sleeping position of sudden infant deaths versus controls. Gilbert et al

19 Consequences of failure to analyse epidemiological research cumulatively Systematic review of preventable risk factors for SIDS from 1970 would have led to earlier recognition of the risks of sleeping on the front and might have prevented over infant deaths in the UK and at least in Europe the USA and Australasia.

20 Section 3 Mapping out what we already know

21 Research ethics committees/irbs

22 Inappropriate continued use of placebo controls in clinical trials assessing the effects on death of antibiotic prophylaxis for colorectal surgery

23 Department of Health, 2001 It is essential that existing sources of evidence, especially systematic reviews, are considered carefully prior to undertaking research Research which duplicates other work unnecessarily, or which is not of sufficient quality to contribute something useful to existing knowledge, is in itself unethical.

24 MS Society supports systematic reviews

25 The Wellcome Trust

26 Section 4 Conclusions: priority setting wisely

27 Alessandro Liberati

28 Priority setting wisely Focus on gaps in our knowledge Choose those gaps that are most important Involve people who fund, conduct and use research Learn how to involve them meaningfully

29 Thank you Social Science Research Unit Institute of Education University College London 18 Woburn Square London WC1H 0NR Tel +44 (0) Web