The consultation paper by the panel of the McKeon Review is available and open for public comment now, so it’s worth examining whether this review (the latest of many into health and medical research) is different from those that have come before.
We can also now assess whether the current recommendations will meet what McKeon has called “the overarching message” of the review - that Australia needs a “stronger connection between health and medical research, and the delivery of health-care services”.
Although this is a summary document (the detailed paper is expected to be released in the next week or so), in general, the recommendations are familiar. Since at least the 1960s, reviews of Australian health and medical research have called for greater investment in health services and systems research to meet the challenge of maintaining a sustainable health-care system.
It’s gratifying to see recognition of the need for health systems research and health economics. Although its not new, the emphasis in this review is stronger than other recent reports. But it fails to grasp the breadth of research required in this area.
As well as informing delivery of services, research also needs to inform “big picture” health policy. While some aspects of health care provision, such as efficacy, quality and safety will benefit from research evidence produced at the level of service delivery, we also need evidence about how efficient, accessible and equitable the health system is.
A better way
Unlike many other Australian government policy areas, the Department of Health and Ageing doesn’t have its own internal research capacity or funding; it relies on the National Health and Medical Research Council (NHMRC) to fulfil this role. This may be appropriate for biomedical and clinical research, but it doesn’t work for health services, health policy and health economics research.
We’re disappointed that the report has recommended that the management and leadership of health services research be left with the NHMRC, given the organisation’s poor track record in supporting this type of research. We believe that to truly achieve evidence–based policies, the review should recommend a similar approach to the United Kingdom, where the department of health has its own policy research program and the National Health Service (NHS) has the National Institute of Health Research, in addition to the separate Medical Research Council.
A new Australian institute of health systems research would be the recipient of quarantined funding for health systems and health services research. This would fall in line with the review’s recommendation that at least 3% of Australian and state and territory government health expenditure (an additional A$2bn to A$3bn per year by mid-2023) be set aside to drive research activity within the health system as an embedded component of the Australian government’s health reforms.
The second important task for such an institute would be to set priorities for health systems research. While the review supports priority setting for research with earmarked funds, many researchers have been less than satisfied with previous priority setting processes in this type of research.
Over the past 15 years, we have seen a diverse range of attempts at health system and services research, including ones based on national health priorities, national research priorities, a priority-based collaboration between the states and the commonwealth, partnership projects and now partnership centres.
While consultations were undertaken prior to each new scheme, no independent evaluation has assessed the success or otherwise of these schemes. And most have come and gone so fast that, in practice, the individual research projects they supported resembled poorly-funded commissioned projects.
Building research capacity
Implementing a new national institute would require research capacity. When a similar need to build research and research capacity was identified in primary care, the response was the Primary Health Care Research Evaluation and Development Strategy and the funding of an institute to provide leadership, and support centres of research excellence alongside, not instead of, access to NHMRC funding.
While the review recognises the importance of building research capacity, it fails to understand that this requires more than providing training, funding and time for health-care professionals to undertake research. Health services researchers come from many non-clinical disciplines and need to be sustained along a career path.
Access to high-quality data is also an essential part of the infrastructure required for health services research. Clinical trials are only one, and an increasingly expensive, way to deliver evidence on what works. We also need to know what works when new treatments are made available to all patients. We need to know what works for so-called rare diseases, where the patient population is not large enough to enable powerful trials, but where the prevalence is increasing, and many people are living with ongoing severe conditions. There’s an urgent need for support for better collections of observational data (such as registries and longitudinal data).
And we need to have the means to link data from various sources. In particular, we need to be able to link data on inputs (health professionals, hospitals and GP practices, for instance) to outputs and outcomes (volume of services provided, performance indicators, and health outcomes).
So far, the data linkage process has focused on linking patients’ data (linking individuals’ in-patient and emergency data with data from cancer registries, for instance). While this is important, there’s very little linkage of patients’ data to data on the health-care providers who treated them. Hospital data don’t indicate who referred patients, for instance, so there’s no link to primary care services. This is a major omission in data linkage given the importance of primary care in reducing hospital expenditures.
There are currently significant barriers to accessing linked data because the extraction process is costly and time consuming. And one-off data extractions that a researcher must keep confidential runs contrary to others reproducing and testing results of a study.
The World Health Organization calls health systems research the “brains of the health system”, and argues for increased investment in this field of research. If the Australian health-care system is not to be left without brains, the final report of the McKeon review will need make health systems research a part of the future of the our system.