THEO MURPHY (AUSTRALIA) HIGH FLYERS THINK TANK
Preventative health: Science and technology in the prevention and early detection of disease
University of Sydney (Eastern Avenue Complex), Thursday 6 November 2008
Some conclusions and recommendations
The Think Tank discussions identified a number of gaps in knowledge and proposed some strategies in order that science and technology can continue to contribute in addressing the preventative health challenges arising in the health areas under consideration. Moreover, because of the commonality of risk factors across diseases the discussion recognised that a number of the proposed strategies are also relevant to other areas identified as national health priorities.
A number of conclusions arise from the Think Tank discussions presented in this report. The main findings are that:
- are themselves trained, or who can communicate with scientists trained, in human genetics and microbial genetics to make sense of all the data emerging from high throughput studies.
- It was also recognised that there are significant barriers to the integration of researchers. Not only are there considerable reporting requirements, but compliance issues and ethical applications also require streamlining. One suggestion proposed to achieve integration was to establish an institute akin to an ‘Australian Centre for Disease Control' that forms a national data repository and provides analysis of this data at a national level. Improved linkages between funding agencies, state or federal, and between ARC and NHMRC are required, to ensure genuine cross-disciplinary research.
- The discussion groups unanimously called for linking data bases for research and patient care. The overall goal is to integrate systems biology and basic science research with national databases (cohort studies, health information, tissue banks, mouse strains, microarray and genomics information) and to implement a national strategy to monitor the databases and make them accessible to researchers. For example, with mental health and gene-environment interactions there are enormous amounts of data available in Australia (eg the Queensland twin registries and the Victorian Adolescent Health Cohort Study), but they are not linked. Linkage would be of benefit in identifying risks and trajectories of a number of illnesses. Part of the problem is also to do with complex IT infrastructures. Improving the technology to facilitate linkage with routine data sources such as Medicare and Pharmaceutical Benefits Scheme data, as well as national mortality and morbidity registers, would assist greatly.
- One example of a data linkage platform of the type that was discussed and seen to be a high priority of all groups, is BioGrid (Box 1) which is used by scientists to enhance and accelerate their research work. Clinicians use it to improve their clinical decision making, and the overall quality of healthcare.
The infrastructure of BioGrid Australia enables discovery research to be accessible via the web with security, intellectual property and privacy addressed. It provides life sciences researchers with the ability to link data across all states regardless of their existing linkage and research platforms. It provides a virtual repository that links participating teaching hospitals and research centres in Australia and overseas.
BioGrid (formerly Bio21 Molecular Medicine Informatics Model) is a platform for linking data in real time which includes dates of diagnosis, clinical symptoms, pathology, radiology reports, and availability of a biospecimen sample, genomic data, MRI images, treatments (drug therapy, radiotherapy and surgical status) in a privacy protected way for authorised users. It allows life science research teams to access and share genetic and clinical research data across multiple organisations by allowing computers containing research and clinical data to be linked together in an ethically approved, secure and controlled way, using the world wide web. How it works
www.biogrid.org.au/pages/index.php http://au.youtube.com/watch?v=9US57ZhGxeo |
- The use of improved biomarkers was another common theme of the discussions. For example, in infectious disease, developing ways of improving rapid testing and point of care testing using biomarkers is very important. Biological markers also have utility for cancer prevention but there also needs to be statistical validation of biomarkers, which is still in its infancy. A question for mental health was how genome-wide associations could be linked with particular biomarkers. These could be valuable not only in understanding the pathophysiology of mental disorders and predicting prognosis and response to treatment, but also in assisting early detection of illness in high risk patients. Again, appropriate funding allocations and collaboration with other areas is absolutely vital.
- After the Preventative Health Taskforce presents its phase 1 report in June 2009 - which will focus on obesity, tobacco and alcohol - other areas need to be determined for adoption in its next phase. Three possibilities raised in discussions were child health, mental health and infectious disease. For example, mental health related disability is not only a significant cost, but it is also a large generic term (akin to saying 'physical health') which covers so many things that there is a need for clarification on a number of levels, such as associated stigma, public policy and science areas.
- Screening for certain diseases was also discussed and some of the risk factors identified, with more work required (eg screening for psychosis). Discussions highlighted the importance of good evidence before implementing a screening program. While some screening programs have been incredibly valuable, others have wasted a large amount of resources and some have led to over diagnosis and, unfortunately, caused harm. Screening data also needs to be linked, wherever it is performed across a range of information systems.
- While we have a large number of biobanks and tissue banks, they tend to be disparate and not linked. It will be a challenge to get an effective set of samples which have sufficient commonality of data. It was also suggested that perhaps the NHMRC should take a leadership role in putting these biobanks together.
- Finally, significant discussion centred on the need to translate research into clinical practice, where currently there is a huge gap between evidence and practice. It is not enough to produce the evidence; translating it into practice requires more research on effective means of translation. It is a different sort of research and just putting out guidelines does't work. What are needed are interactive programs with health practitioners, and here information technology has a huge role to play in implementing the fruits of research.
Recommendations
- Undertake a national health survey every five years to enable disease and risk factor trends to be analysed and monitored. Australia is currently behind some poorer developing countries in collecting this type of data.
- Following the Preventative Health Taskforce's phase 1 report in June 2009 - which will focus on obesity, tobacco and alcohol - other areas which might be adopted for its next phase include child health, mental health and infectious disease. There should be strong overlaps between these new initiatives and the earlier work of the Taskforce.
- While acknowledging potential barriers such as complex IT infrastructures and privacy considerations, hospital and institutional data bases should increasingly be linked and data sets integrated, to assist researchers in identifying health risks. In turn, these data sets could be linked with Medicare and Pharmaceutical Benefits Scheme data as well as national mortality and morbidity registers. Universal patient identifiers and increased attention to support hospital-based researchers should be recognised as critical to successful outcomes. Governments should adopt and support a culture of integrating research to improve current and future outcomes.
- Establish a national biological repository of tissue samples with prior consent of patients to enable future research applications. While there are many biobanks and tissue banks in Australia, these are generally small, under-resourced and not well linked to each other. The NHMRC might take a leadership role in fostering development of such a national repository.
- Improve linkages between funding bodies - such as the ARC and NHMRC - to facilitate the integration of human health and relevant animal studies.
- Reduce excessive reporting requirements beyond those expressed in the NHMRC National Statementon Ethical Conduct in Human Research (2007), and multiple ethical clearances, which together act as significant barriers both to research programs and the integration of researchers into multi-centre, multidisciplinary teams.
- Strengthen and expand the role of the National Preventative Health Taskforce by requiring inputs and accountability from a range of relevant federal and state agencies, including those responsible for water, food and the environment, that are essential for a holistic approach to public health. Such strategies need to address gaps in the treatment of disadvantaged, indigenous Australians and other minority groups. This will necessitate broad investment in education - such as in cancer predisposition and healthy lifestyle choices - at every level, and funding preventative strategies that not only have a strong evidence base but are also likely to impact on a broad range of physical and mental health outcomes.
