Most people would agree that research is necessary to improve clinical care: research tells us which treatments and services work, and which don’t, so that we can provide patients with the most appropriate, and most effective care. But an important question is: how much of the research that is done in biomedicine actually leads to better clinical care?
We can think of the research process as a pipeline, that starts with the question of interest, and ends up with a change in clinical practice. A landmark paper published in The Lancet by Paul Glasziou and Iain Chalmers in 2014 showed that this pipeline is dramatically and inherently leaky. Of the billions invested each year in biomedical research, Glasziou and Chalmers estimated that a staggering 85% may be wasted: it never has a chance of improving patient care.
Of the billions invested each year in biomedical research, Glasziou and Chalmers estimated that a staggering 85% may be wasted: it never has a chance of improving patient care.
These leaks occur at five main stages: 1) Because the wrong question is asked. 2) Because the wrong methods are used. 3) Through inefficient and burdensome regulation. 4) Through incomplete publication of research findings. 5) Because published research findings are not usable in practice.
Palliative care is a philosophy of care for people who are approaching the end of their life, where the goal of care is to improve the quality of that person’s life rather than trying to extend its quantity. The importance of research in improving the quality of end of life care we provide was recognised by Dame Cicely Saunders, the founder of the modern hospice movement, who pioneered research in the 1960s into the safety of opioids (such as morphine) for people close to death. The volume of research carried out in palliative care has increased since Cicely Saunders’ pioneering studies, but what do we know about its value?
Let’s consider the first leak in the pipeline: what constitutes the wrong research question? Aren’t all research questions of value? The answer, sadly, is no. If a research question is asked, to which there is already a reliable answer, then repeating this study is of little benefit to patients. Similarly, if a research question is considered of little importance to patient and families, then resources would arguably be better spent elsewhere. And of course, asking low priority research questions means that high priority questions may be ignored. This was illustrated by the Neuberger Review into the Liverpool Care Pathway (LCP) which showed the terrible consequences of national policies that are not backed up by appropriate evidence from research.
What about the second leak in the pipeline, the methods we use to answer questions? Palliative care research has been criticised for focusing on describing problems (how common is pain in people with cancer?), rather than providing solutions to them (what is the best way to relieve pain in people with cancer?). While research publication in palliative care has grown in recent decades, the growth of Randomised Controlled Trials has been slow compared to other specialties. In part this is due to a dearth of trained methodologists in palliative care research: there are more professors of oncology at the Royal Marsden hospital in London, than there are professors of palliative care in the country.
And at the crux of the issue lies funding. While it is estimated that around 20% of health care expenditure is spent in the last year of life, just 0.1% of medical research funding is allocated to palliative and end of life care research. That’s 10p in every £100 for something that will affect every one of us.
Reducing waste in palliative care research requires investment: in clinical academics trained to carry out research, and in studies that provide answers to questions concerning ‘how’ and not just ‘what’.
Without this investment, we will end up with more small-scale studies that describe problems but do not provide solutions to them. And national policies will, once again, need to be plucked out of thin air.
Katherine Sleeman will give a keynote lecture on Increasing the Value of Research in Palliative Care at the Royal Society of Medicine on 18th December 2017