EU driving e-health

Estonia, which is coming to the end of its presidency of the Council of the European Union, has recently sought to bring together EU countries that would be willing to launch a project concerning the cross-border movement of healthcare data.

The Digital Health Society, initiated by the Estonian Presidency of the Council of the European Union and ECHAlliance, have assembled an e-Health Declaration that includes more than 100 European organisations’ proposals for developing e-health in Europe.

The Declaration describes the bottlenecks that hamper the development of e-health, such as the lack of people’s trust in e-services in Europe, the lack of interoperability between different information systems, the lack of a clear legal framework, inadequate training of health-care professionals. Proposing solutions for overcoming these obstacles, the document emphasizes the need for unified approaches to the development of data exchange infrastructure, raising people’s awareness of the use of e-health solutions and implementing the European Union Data Protection Regulation in a way that it does not create unnecessary obstacles to the free flow of data between member states.

At the recent e-health conference held in Estonia, European Commissioner for Health and Food Safety Vytenis Andriukaitis called for a strong partnership within the EU to move towards simplified public e-services and formalities.

This would make interactions between citizens and public administrations easier.

“Let us all work together with governments, health professionals, businesses, and researchers, but above all with the patients to make digital health in Europe a reality,” he said.

Central to the EU’s agenda on digital innovation in healthcare is: the right of citizens to access, manage and control their health data electronically in a convenient and secure manner; to better use health data, in particular for research and innovation purpose; and the better use of health data, in particular for research and innovation purposes.

Clemens Martin Auer, Director General of the Austrian Federal Ministry of Health and Women’s Affairs, said that using the opportunities of information technology in healthcare, or e-health, is one of the most important innovative drivers in the healthcare sector: “Especially for organizing the continuous care in the fragmented world of healthcare services.”

The EU acknowledges that at that level, although health competence remains the responsibility of each member state, there is a goal for a common understanding to be formed into an agreement that fixes common components and common infrastructure that enables the free flow of health data.

A number of European member states have already designed their healthcare system in order to digitalise data. The remaining member states should implement strategies and policies for the creation of electronic health records across their country in order to stimulate the innovation for health and exchanges data with other EU countries.

MEREDITH HORNE

[Series] Evidence on public health interventions in humanitarian crises

Recognition of the need for evidence-based interventions to help to improve the effectiveness and efficiency of humanitarian responses has been increasing. However, little is known about the breadth and quality of evidence on health interventions in humanitarian crises. We describe the findings of a systematic review with the aim of examining the quantity and quality of evidence on public health interventions in humanitarian crises to identify key research gaps. We identified 345 studies published between 1980 and 2014 that met our inclusion criteria.

[Editorial] Heart failure in an ageing population

An Article by Nathalie Conrad and colleagues published online on Nov 21 in The Lancet provides the most comprehensive epidemiology to date of the changing burden of heart failure in the UK according to age, sex, regional location, and socioeconomic status. Their data show an increase in the number of new heart failure diagnoses, at least partly because of an ageing population. Comorbidities also continued to increase for multiple chronic conditions such as hypertension, atrial fibrillation, diabetes, cancer, and osteoarthritis.

[Correspondence] On evidence-based medicine

In their Review,1 Benjamin Djulbegovic and Gordon H Guyatt do not adequately address the undue emphasis placed on randomisation in clinical research, which is arguably the main criticism of evidence-based medicine (EBM).

[Comment] Research ethics and evidence for humanitarian health

People affected by humanitarian crises deserve responses that promote health, respect dignity, and uphold rights. In this Lancet Series on health in humanitarian crises, Karl Blanchet and colleagues1 highlight substantial deficiencies in the evidence available to guide humanitarian responses. Their call for additional research echoes similar appeals.2 In the second Series paper, Francesco Checchi and colleagues3 argue for improved methods in such research, highlighting the need for better information systems.

[Editorial] Alcohol and cancer

The Nov 7 publication of Alcohol and Cancer: a Statement of the American Society of Clinical Oncology (ASCO) emphasises the prominence of alcohol as a proven cause of many cancers. This view is not novel and comes exactly 30 years after a working group of the International Agency for Research on Cancer determined that alcoholic beverages were carcinogenic to humans. It has been echoed by other cancer societies since then but seemingly ignored by the wider medical community and by society. The influential endorsement by ASCO provides a powerful impetus to act on decades of evidence that alcohol harms health.

[Perspectives] The digitised clinical trial

Nicole is a 46-year-old mother of two who works for her local bank. She has an autoimmune condition that has been difficult to control. She was excited to see a video on her patient community website about a research programme for a new therapeutic intervention. After absorbing the details of the study, being informed of its risks and benefits, confirming her qualifications, and being given the opportunity to ask any questions, Nicole completed the smartphone consent. She then began a rigorous study regimen: daily medication, weekly monitoring of vital signs, and continuous tracking of her activity and quality of sleep.

Close the clean drinking water gap

BY AMA PRESIDENT DR MICHAEL GANNON

Safe drinking water is an indispensable human right. The leading national and international health bodies, such as the World Health Organization and the United Nations, all agree that safe drinking water is essential to sustain life, and a prequisite for the realisation of other human rights. The UN General Assembly explicitly recognises the human right to clean drinking water.

Having access to sufficient, safe, accessible and affordable drinking water is an important public health issue.

In developed nations such as Australia, it is often assumed that safe drinking water is accessible to all. However, this is not the case, particularly in many remote or very remote communities where artesian (bore) water is often the primary source of drinking and household water.

According to the Bureau of Statistics (2007), for discrete Indigenous communities the majority accessed bore water (58 per cent), while other sources of water included: town supply (19 per cent), river or reservoir (5 per cent), rain water tank (3 per cent), well or spring water (3 per cent), and other sources of water (2 per cent).

While the supply of potable water (defined as waterthat is safe to drink or to use for food preparation, without risk of health problems) impacts on all people living in remote areas of Australia, Aboriginal and Torres Strait Islander people are disproportionately affected.

Many Aboriginal and Torres Strait Islander people living remotely find it challenging to obtain water that is of sufficient quantity (and quality) to meet their needs.

In 2012, the Australian Bureau of Statistics estimated that there were more than 400 discrete Aboriginal communities across Australia, with the largest number in Western Australia. Data collected on over 270 remote WA communities indicated that the quality of drinking water did not meet the Australian standards, as outlined in the Australian Drinking Water Guidelines (ADWG), approximately 30 per cent of the time.

While the National Health and Medical Research Council (NHMRC) has responsibility for the ADWG, this is not a mandatory standard, with State and Territory Governments and local councils responsible for the implementation and monitoring of water quality and safety. Yet during the two year period 2012-2014, 80 per cent of remote Aboriginal communities in Western Australia failed to meet quality standard testing at least once.

There are obvious health consequences from drinking poor quality water. Some Aboriginal communities are known to have unsafe levels of chemical contaminants such as nitrates and uranium in the water. Nitrates and uranium occur naturally, and are common in the Goldfields and Pilbara regions.

‘Blue Baby Syndrome’ – where an infant’s skin shows a bluish colour and they can have trouble breathing – can be caused by excessive nitrates in the diet, which reduce the blood’s ability to carry oxygen. It can occur where prepared baby formula is made with well water. Water tested in over 270 remote communities in WA showed nitrate levels 10 times the recommended levels.

It is concerning that Aboriginal and Torres Strait Islander people living remotely often have no choice but to pay for safe drinking water. While the majority of us enjoy free, safe drinking water from the tap, those who can least afford it often have to pay just to ensure they are not drinking water sourced from rivers, streams, rivers, cisterns, poorly constructed wells, or water from an unsafe catchment.

The AMA is a member of the Close the Gap steering committee and the Public Health team has raised potable water as a Close the Gap target.

The solution may not just be in more bottled water. In communities without adequate recycling and waste disposal services, thousands of extra plastic water bottles create additional environmental problems.

Governments must invest in infrastructure, such as proper treatment facilities, water storage facilities and distribution systems to meet the changing demands of communities.

All Australians must have permanent and free access to safe water. It is a basic human right and it is difficult to understand how this hasn’t already been implemented and addressed.

Progress and barriers to a digital health upgrade

In collaboration with Harvard Business Review Analytic Services, Microsoft has published a briefing paper that highlights the progress being made in digital-enabled health care, the barriers to progress, and how a digitally augmented system can improve the lives of all Australians.

Microsoft sought input from Australian experts on the current and future state of our health care system and has released Embracing the Change Mandate: The 2020 Digital Transformation Agenda for Australia’s Health Care Sector.

Establishing a new digital health care system is complex.

“We need to deliver care; reduce errors, waste, and duplication of services; and create a sustainable system amid growing expectations and financial constraints,” says Professor Johanna Westbrook, Director of the Centre for Health Systems and Safety Research (CHSSR) at Macquarie University in Sydney.

The report states there are key steps for leveraging digital technologies: working towards full digital transformation; localising international technology options; collaborating with technology providers and IT staff; sharing lessons learned within the sector; promoting digital success; and developing digital health skills.

With Australian healthcare organisations clearly moving down the track to digital health initiatives, many have seen positive results.

Richard Royle at PricewaterhouseCoopers Australia believes the evidence supports electronic records leading to improved length of stay and clinical outcomes.

“The ability to document, in an electronic record, the clinical pathways to follow for diagnoses produces greater consistencies of clinical outcomes and reduces readmissions,” he says.

However, there are still digital challenges needed to be overcome.

Dr Andrew Hugman of South East Sydney Local Health District, part of NSW Health, also contributed to the report and believes there needs to be greater engagement across all stakeholders.

“Many clinicians believe health IT projects create barriers to patient care as opposed to being the crucial tools for delivering the potential for massive gains,” he says.

“Once there is a better awareness from both the public and clinicians of how we can use the huge amount of health data we are collecting, there will be more drive for greater transparency to interrogate and analyse the data.”

The AMA provided a submission earlier this year to the Joint Standing Committee’s inquiry into the rollout of the National Broadband Network (NBN). The submission focused on broadband access for regional, rural and remote health services, while centred around the principle that all Australians, regardless of where they live or work, should have equitable access to high-speed and reliable internet services.

The submission highlights that the NBN is a necessary and worthy investment that is needed to enhance the important contribution made by regional areas to Australia’s economy. It notes that the economic and social benefits of advances in information and communications technology can only be fully realised through access to fast, reliable and affordable broadband services.

However, the submission notes there are many regional rural and remote areas that have very poor broadband connection. Internet services delivered via satellite only make available relatively small download allowances and these come at a much higher cost and slower speed than those services available via fibre or fixed wireless in metropolitan areas. The submission stresses that this ‘data drought’ must be addressed as a matter of priority.

Among other things, the AMA has urged the Government to find ways to extend the boundaries of the NBN’s fibre and fixed wireless footprints into the satellite footprint wherever possible to lessen the reliance on satellite for those living in rural and remote Australia and to address the increase in internet usage over time.

A copy of Microsoft’s report can be found here: https://sendto.stwgroup.com.au/message/JNd9m1h4J9MGnIf0yE9CDo/YBqDGbzcKslfYjQVos48fE/xHupsBS0HNo4x2VyBLPkhH/20624_HBR_Briefing%20Paper_Microsoft_Health.pdf

The AMA’s response to the Joint Standing Committee’s inquiry into the rollout of the National Broadband Network (NBN) can be found here: https://ama.com.au/system/tdf/documents/AMA%20submission%20to%20Joint%20Standing%20Committee%20on%20the%20NBN.pdf?file=1&type=node&id=46166

MEREDITH HORNE

Government’s Brain Cancer Mission

The Federal Government has announced a $100 million funding plan to rapidly increase brain cancer survival by bolstering patients’ access to clinical trials and accelerating the discovery of new therapies.

This will be done by expanding research platforms and technologies, and equipping researchers with the best tools and infrastructure.

The Australian Brain Cancer Mission is a partnership between the Federal Government, philanthropists, medical experts, patients and their families.

As a first step, the Government is providing $50 million through the Medical Research Future Fund (MRFF), combined with $10 million from the Minderoo Foundation’s Eliminate Cancer Initiative and a commitment of $20 million from Cure Brain Cancer Foundation.

The Government is expected to announce the remaining $20 million in the coming months.

Health Minister Greg Hunt said the commitment was made with the aim of halving deaths from brain cancer over the next decade and to “imagine the potential in our lives to eliminate brain cancer as a fatal disease”.

The Mission is underpinned by a research roadmap developed by Australian and international experts in brain cancer treatment and research, and those affected by brain cancer, their advocates and philanthropic interests.

Cure Brain Cancer Foundation chief executive officer Michelle Stewart said the announcement: “makes a massive difference in the new activities that can be started up, but also in terms of providing a spotlight for brain cancer.

“We’ve never had an overall strategic framework or a plan for tackling brain cancer and now we have a national plan.”

Ms Stewart said brain cancer killed more than 30 children in Australia each year, more than any other disease. It also kills more people aged over 40 than any other type of cancer.

A key objective of the Australian Brain Cancer Mission is to ensure every patient, adult and child in Australia has the opportunity to participate in clinical trials.

“We want to get every Australian who has brain cancer the opportunity to be part of a clinical trial to address their particular type of brain cancer, there are more than 100 subtypes, and at the end of the day our goal is to halve mortality rates over the course of the next decade, but ultimately to defeat it as part of a global initiative,” Minister Hunt said.

Prioritised first investments include the establishment of an Australian arm of the GBM AGILE, an international adaptive trial platform for adults with glioblastoma, which will be co-funded by the Turnbull Government, the Minderoo Foundation’s Eliminate Cancer Initiative and Cure Brain Cancer Foundation.

Other priorities include new funding for Australian and New Zealand Children’s Haematology Oncology Group (ANZCHOG) clinical trial centres, and support for the consolidation of the national ZERO Children’s Cancer initiative.

There will be opportunities for new research grant projects, scholarships, fellowships and biopharmaceutical industry partnerships to collaborate on drug discovery.

Cancer Australia will administer the Mission, supported by a Strategic Advisory Group.

MEREDITH HORNE