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Some suggestions for the national and NSW reviews of health and medical research

Croakey has already had something of a whinge about the narrow terms of reference for the national review of health and medical research.

Others in public health have recently raised concerns about the focus of those conducting a similar review in NSW (see bottom of this post for details).

Those conducting the national and state reviews could do worse than read the relevant sections of Testing Treatments: Better research for better healthcare, the book profiled in the previous post.

Amongst other things, the book explores how the commercial and academic drivers of research have not done enough to identify and address patients’ priorities.

The authors write: “Regrettably, much of the money spent on medical research is wasted at successive stages – by asking the wrong research questions; by doing studies that are unnecessary or poorly designed; by failing to publish and make accessible the research results in full; and by producing biased and unhelpful research reports. This should matter to everyone – researchers, research funders, clinicians, tax payers, and above all patients.”

The book offers an eight-point “Blueprint for a better future” for the testing and use of treatments. A summary of these follows below (not in the order that they appear in the book but as may be most relevant for the reviews of medical research).

1. Identify and prioritise research addressing questions deemed important by patients and clinicians.
The portfolios of research funders and academic institutions are dominated by basic research that is unlikely to benefit patients in the foreseeable future, and by research directed at maximizing profits for industry. Applied research into questions that offer no potential to make money, yet matter to patients, has to fight for resources, even when it is publicly supported. 

2. Increase the capacity for preparing, maintaining, and disseminating systematic reviews of research evidence about the effects of treatments.
Many of the answers to questions about the effects of treatments can be readily addressed by systematically reviewing evidence that already exists, by keeping such reviews up to date, and by disseminating the results efficiently to professionals and patients. There is a long way to go before the messages from existing evidence are readily available in systematic reviews.

3. Tackle inefficiencies within the research community.
Many people are astonished to find that researchers are not required to assess systematically what is known already when they seek funding and ethical approval for new research. The consequence is inevitable – poorly designed and frankly unnecessary research continues on a scale that is unacceptable on ethical as well as scientific grounds. We should press research funders and research ethics committees to ensure that researchers do not embark on new research of any kind without referring to systematic reviews of existing relevant evidence. Reports of new research should begin by referring to systematic reviews showing why the additional research is needed, and end by showing what difference the new results have made to the totality of evidence.

4. Outlaw biased publication practices.
To help stamp out biased publication practices, steps are needed both when trials begin and when they end. When trials begin they should be registered and the protocols made publicly available for scrutiny. On completion, the results of all trials should be published and the raw data made accessible for scrutiny and further analysis.

5. Demand transparency of information about commercial and other conflicts of interests.
There is now substantial evidence that vested financial and other interests sometimes take precedence over the interests of patients in the design, conduct, analysis, interpretation and use of research. This jeopardizes the mutual trust required to ensure that research serves the interests of patients more effectively. Everyone involved, from commercial companies to patient pressure groups, should be required to be transparent about any vested interests other than the well-being of patients.

6. Increase general knowledge about how to judge whether claims about treatment effects are trustworthy.
A condition for change is greater public awareness of the ways in which bias and the play of chance can seriously distort evidence about the effects of treatments. One of the most important features of scientific investigation – recognizing and minimizing bias – can hardly be regarded as ‘general knowledge’ at present. We need more determined efforts to reduce these important gaps in understanding, and to make these concepts a routine part of education, from school age onwards.

7. Encourage honesty when there are uncertainties about the effects of treatments.

8. Confront double standards on consent to treatment.
Clinicians who are prepared to admit uncertainties about the effects of treatments and address them in formal treatment comparisons are subject to more stringent rules for interacting with patients than are their colleagues who are not. This perverse double standard is illogical and indefensible

****

The NSW review

Meanwhile, below is a comment from a public health researcher at the University of Sydney, Julie Leask, in response to a recent Sydney Morning Herald article by Peter Wills, who is chairing the NSW Health and Medical Research Strategic Review Committee. The review is due to submit an interim report to the NSW Government by the end of November, in time to feed into the national review which is expected to report to the Federal Government by the end of next August.

Julie Leask writes:

Peter Wills extolls the benefits of a more timely translation of research into policy and practice (SMH November 7). He gives three historical examples where this has taken too long to occur: asbestos and lung cancer, vitamin C and scurvy, and ozone depletion and skin cancer. All three are examples of illness-preventing measures learnt mostly by doing population health research.

Yet the article and much of the Wills review focuses not on this, but on health care research – how best to treat those who are already sick. Clearly there is a need to support research that investigates better treatments and determines the most effective care for patients.

But policies and actions to prevent illness will give NSW the greatest health gains for each dollar spent. Therefore, it would be sensible to give greater attention to population health research that seeks to keep people out of hospital in the first place.

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#IPCHIV14
AIDA Conference 2014
Congress Lowitja 2014
CRANAplus conference 2014
Cultural Solutions - Healing Foundation forum 2014
Lowitja Institute Continuous Quality Improvement conference 2014
National Suicide Prevention Conference 2014
Racism and children/youth health symposium 2014
Rural & Remote Health Scientific Symposium 2014
2015 conferences
#CPHCEforum
#CRANAplus15
#HSR15
#NRHC15
#OTCC15
Population Health Congress 2015
2016 conferences
#AHHAsim16
#AHMRC16
#ANROWS2016
#ATSISPEP
#AusCanIndigenousWellness
#cphce2016
#CPHCEforum16
#CRANAplus2016
#IAMRA2016
#LowitjaConf2016
#PreventObesity16