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[caption id="attachment_27770" align="alignnone" width="300"] You create a lot of healthcare data during your life. What happens after it? Tewan Banditrukkanka/Shutterstock[/caption] Jon Cornwall, Victoria University of Wellington Death is inevitable. The creation of healthcare records about every complaint and ailment we seek treatment for is also a near-certainty. Data about patients is a vital cog in the provision of efficient health services. Our study explores what happens to those healthcare records after you die. We focus on New Zealand’s legal situation and practices, but the issue is truly a global one.
Read More: Decades on from Henrietta Lacks, we’re still struggling to find an adequate consent model
Previously, healthcare records were held in paper form and stored in an archive. Next came the advent of digital storage in on-site databases. When you died, your records were either shredded or erased, depending on the technology. But it is now increasingly common for healthcare records to be digitised and held in a central repository. They can potentially be held for an indefinite period after someone dies, depending on the jurisdiction. Should we be worried?

A question of value

Large, population-based healthcare data sets have immense value. This is particularly true of records that include genomic information alongside other healthcare data – a phenomenon that will only increase as information about a person’s genes is more widely used in clinical treatment. These posthumous healthcare data sets, which will grow in size and detail over the coming decades, could tell us a great deal about diseases and heritability. Data sets from generations of families and communities may well be available for research, and able to be analysed. Information on this scale is worth a lot, especially for data storage companies and those with a financial interest in these data sets, such as pharmaceutical companies. Imagine, for instance, if a company could quickly analyse millions of genomes to isolate a disease that could be cured by an engineered pharmaceutical, and the commercial value this would create. So how will this affect the individual whose data is held and their surviving family? Many people would be willing to donate medical records if the downstream result was beneficial for their community and country. Yet the lines become easily blurred. Would it be acceptable if data sets were sent to foreign companies? What if they provided a cure free of charge to the families of citizens whose data they used? How about if the cure was half price, or full price, but the other option was having no cure at all? Would it be all right for companies to make millions of dollars out of this information? There is no easy answer. [caption id="attachment_27771" align="alignnone" width="300"] Every time you visit a doctor’s office, you create data. Keith Bell/Shutterstock[/caption]

What’s the legal situation?

It’s impossible to talk about the long term fate of healthcare data without considering privacy and consent. As part of medical research, for example, participants are required to provide informed consent and often the gathered data are anonymised. Access to posthumous medical records, on the other hand, is not highly regulated or protected in most countries, and the laws surrounding access are incredibly unclear. In New Zealand, a deceased person has no privacy rights under the Privacy Act. And while healthcare data has to be held for a minimum of 10 years after death, the regulatory body which is then custodian of that data may decide - broadly - what purposes it may be used for. Given that the custodian can be anyone from a health board or local doctor to a commercial institution that stores health records, the situation is exceedingly vague.
Read More: Human embryo CRISPR advances science but let’s focus on ethics, not world firsts
It is often argued that use of anonymous data sets do not require consent from an individual – in our case, a deceased person cannot provide this anyway. However the lines of true “anonymity” are becoming more blurred, particularly thanks to genomics. Your own genome is partly that of your family and relatives. They may also have an emotional stake, and possibly a legal stake, in any action or research where the genome of a deceased family member is involved. The medical profession has not always dealt well with consent and ethics issues. In one infamous case, the cancer cells of Henrietta Lacks – a 31-year-old American woman who died of cervical cancer in 1951 – have been used thousands of times in research projects. She unwittingly made an invaluable contribution to global health, yet she never consented and her family was not consulted. Then there is the fact that if large data bases are readily available, the possibility of data linkage increases – matching data sets that may belong to the same person – potentially undermining the ability to maintain true anonymity for the individual and their family.

What happens now?

The New Zealand and Australian governments have signalled that healthcare data are a widely underused resource. Commercialisation of such data is a possibility. At some point, large posthumous healthcare data sets from these countries could potentially be accessed by researchers and private institutions around the world. It is time for the public to decide what they think is reasonable. If the use of posthumous healthcare data is not aligned with the wishes of society, especially its desire for anonymity, the trust between our healthcare providers and patients may become compromised. The ConversationHealthcare data sets have immense value, but the public must be consulted about their use. Only then can the potential of posthumous healthcare data sets be properly realised. Jon Cornwall, Senior Lecturer, Faculty of Health, Victoria University of Wellington This article was originally published on The Conversation. Read the original article. [post_title] => Healthcare records: take them to the grave? [post_excerpt] => Our healthcare records outlive us. It's time to decide what happens to the data once we're gone. [post_status] => publish [comment_status] => open [ping_status] => open [post_password] => [post_name] => 27766 [to_ping] => [pinged] => [post_modified] => 2017-08-07 15:08:17 [post_modified_gmt] => 2017-08-07 05:08:17 [post_content_filtered] => [post_parent] => 0 [guid] => http://www.governmentnews.com.au/?p=27766 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [1] => WP_Post Object ( [ID] => 18027 [post_author] => 655 [post_date] => 2015-02-10 11:41:42 [post_date_gmt] => 2015-02-10 00:41:42 [post_content] => [caption id="attachment_18028" align="alignnone" width="300"]Health Procurement pic web Achieving best in show healthcare procurement and supply chain operations.[/caption] [Media Partnership Announcement] Good procurement and supply management practices in the Healthcare sector matter perhaps more than anywhere else. Procurement and supply chain managers in the healthcare sector are facing challenges from continually changing and highly demanding healthcare expectations where all the FIVE rights are critical. Not just getting the right goods to the right place at the right time to the right quality – but also at the right price. The HealthProcure 2015 conference held in Melbourne on the 17-19 February addresses key challenges, including how to implement effective procurement models, innovation, stock inventory management and redesigned supplier-contractor relations. Some of the keynote speakers at the conference will include Matt Mazzotta, Chief Procurement Officer at Queensland Department of Health who will share his experiences on how Queensland Health successfully transformed their supply chain in a competitive market and optimised their procurement practices. Alba Chliakhtine, Director Procurement at Health Purchasing Victoria will provide insights on the impact of general trends and challenges that are affecting health procurement productivity and Natalie Budovsky, Head of Strategic Sourcing at Healthdirect Australia will help procurement managers discover different approaches to implement procurement systems, models and strategies. Key benefits of attending will include: •    Learn how to implement high value procurement models and strategies •    Hear case studies from industry leaders and how they are benefitting from reformed supplier and contract management •    Discover how to build more efficient stock inventory management •    Identify specific health procurement skills to improve procurement process •    Improve quality outcomes by introducing innovation and ICT procurement systems •    Create cost reduction strategies to meet budget expectations The HealthProcure 2015 conference will see the largest gathering of supply chain and procurement managers from private and public hospitals, aged care operators, government departments to meet and learn about the newest developments in health procurement across the whole healthcare sector with unique case studies, interactive panel discussions and through keynote presentations. To register to participate at this important event, and to download the full conference brochure visit www.questevents.com.au Government News is a proud Media Partner of the Health Procure 2015 Conference [post_title] => Healthcare procurement under spotlight [post_excerpt] => Leading procurement managers from Australia’s healthcare sector will meet in Melbourne discuss how to decrease costs and increase results. [post_status] => publish [comment_status] => open [ping_status] => open [post_password] => [post_name] => healthcare-procurement-spotlight [to_ping] => [pinged] => [post_modified] => 2015-02-12 19:07:06 [post_modified_gmt] => 2015-02-12 08:07:06 [post_content_filtered] => [post_parent] => 0 [guid] => http://www.governmentnews.com.au/?p=18027 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [2] => WP_Post Object ( [ID] => 16927 [post_author] => 671 [post_date] => 2014-10-30 20:25:26 [post_date_gmt] => 2014-10-30 09:25:26 [post_content] => February  22nd A software glitch that hit the system used to dispense medications to hospital patients in Brisbane’s public Metro North Hospital and Health Service has again put Queensland Health’s technology performance in casualty after the state’s Nurse’ union and Labor Opposition hit out at life threatening dangers revealed in an internal risk report. The computer bugs affected software supplied by iMDsoft for Metro North’s Metavision Intensive Care system and came to light after risk assessment provided to the state government warned there was a 60 per cent to 90 per cent chance of preventable death occurring over the period of a month if left unaddressed. The serious near miss and subsequent manual intervention has put health services across Australia on alert over how potential problems and associated risks of eHealth systems are managed as most states pursue the big technology rollouts. The issue of the Metavision implementation hit Queensland’s state Parliament on Tuesday with the Labor Opposition launching into the Newman government over what was being done to tell patients about the risks of the IT system being used to prescribe medication to them. Predictably, the flurry of questions prompted a succession of reminders of the Bligh government’s now globally infamous software disaster of the Queensland Health Payroll that chewed through $1 billion was slammed in a subsequent Royal Commission and resulted in IBM being banned from government work in the state. Politics aside, doctors and the software company at the centre of the controversy say the very fact that the problems were detected is in itself a salutary lesson about how risks surrounding such problems can and should be managed. Electronic prescribing and medication management has long been hailed as one of the greatest benefits of moving to electronic health and medical records because of the potential to detect and prevent patients getting combinations of drugs that could produce adverse side effects including potentially deadly allergic reactions. A major problem for prescribing clinicians in hospitals and primary care is that without access to eHealth systems, it was frequently difficult to quickly see or know what medications a patient had previously been prescribed by other treating clinicians because of the mishmash of paper records that didn’t always travel with the person being treated. The bottom line is that plenty of people used to die from paper based medication mix-ups. The Queensland president of the Australian Medical Association, Dr Shaun Rudd, is one clinician pointing out that failsafe mechanisms managed to kick-in and detect the problems. “It’s important that we have good quality control in hospitals and obviously they have found there is an issue with this [system],” Dr Rudd told Government News. “They’re working towards fixing this issue, it’s unfortunate that it happened, but the good thing is that it has been uncovered.” Dr Rudd said that in the interim, a more manual method was being used and that there was ultimately it was still necessary to have a qualified human in charge of handing out drugs and medications. “The [AMAQ] firmly believe that [at] the final point whenever any patient is being given medication, [there must be] a qualified person who is checking that. It should be a registered nurse at least. That’s the final quality control.” Dr Rudd stressed that the imperative to have good technology in hospitals was increasing, not diminishing, but expressed frustration with the degree of progress being made in hospitals. “Really there is no question that the tertiary and secondary care systems and hospitals is way behind primary health care. Doctors have had computers on their desks for 20 years. State hospitals need to get themselves organised,” Dr Rudd said. He said that it was “crazy” that so many paper-based systems still existed in secondary and tertiary healthcare. Moreover, as the number of treatments and medications increased, computers would be essential in looking-up potential negative interactions. Meanwhile, the company at the centre of the controversy, iMDsoft, said in a statement that it was “aware of this issue, and has already provided a solution to Queensland Heath.” “The software fix has been in testing at the site for several weeks and will be implemented in the near future,” the iMDSoft statement said. “The risks highlighted by the report were originally identified during testing and, with close cooperation between iMDsoft and the clinicians at the Hospital and Health Service sites, a mitigation plan was immediately put into effect.” “We have partnered with Queensland Health for five years in order to achieve these goals. We will continue to collaborate closely with Queensland Health for a safe and expedient implementation of the solution we have provided,” the company said. [post_title] => Doctors say critical Queensland Health software bug treatable [post_excerpt] => Disconnected paper records a worse affliction. [post_status] => publish [comment_status] => open [ping_status] => open [post_password] => [post_name] => doctors-say-critical-queensland-health-software-bug-treatable [to_ping] => [pinged] => [post_modified] => 2014-10-31 01:43:01 [post_modified_gmt] => 2014-10-30 14:43:01 [post_content_filtered] => [post_parent] => 0 [guid] => http://www.governmentnews.com.au/?p=16927 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [3] => WP_Post Object ( [ID] => 16403 [post_author] => 671 [post_date] => 2014-09-22 18:31:10 [post_date_gmt] => 2014-09-22 08:31:10 [post_content] => 000-176-256_0042.JPG The military’s long march to get its nascent eHealth system out of triage and into the hands of Australian Defence Force members and medical staff has managed to leap-frog similar civilian efforts. The massive department said on Friday said the new ADF eHealth system has been “successfully rolled out in Defence health facilities in Queensland, the Northern Territory and Western Australia” with facilities across the rest of Australia to be up and running by “the end of 2014.” It’s a feat likely to produce a concerned pang or two at the office of Health Minister Peter Dutton who is still contemplating the best way forward for the frequently troubled civilian eHealth counterpart, the Personally Controlled Electronic Health Record (PCEHR). Defence initially launched its eHealth foray in February 2011 as the ‘Joint eHealth Data and Information System’, or JeHDI for short. The Defence Force had the system initially slated to cost $55.7 million, but it ultimately came in well over double the initial planned price tag at $133 million. Price tags and politics aside, the JeHDI project has set a comparatively cracking pace to its civilian equivalent at the National eHealth Transition Authority (NeHTA) – first overseen by now Prime Minister Tony Abbott – which has taken almost a decade to roll out and outlived two changes of government under four Prime Ministers. Assistant Minister for Defence, Stuart Robert, said Defence’s eHealth System will now support “all primary health care services to ADF members and establishes Defence as the first organisation in Australia to introduce a national eHealth record management system.” Defence’s need for a functional and accurate eHealth system is a pressing one, with thousands of troops on deployment in active combat zones like Afghanistan and Iraq over recent years highlighting the urgency of being able to obtain accurate information on personnel. Now, as soldiers and other personnel return home, there is a growing need for Defence to be able to share electronic health information in a usable format, not just within Defence but also with civilian health and care professionals. “While the new [eHealth] system will certainly reduce red tape, it will also improve the availability of accurate, up-to-date health data to defence members’ treating clinicians and their health care providers,” Mr Robert said. “Importantly, it will also allow health information to be easily and accurately passed to the Department of Veterans’ Affairs as well as to civilian health providers.” The activation of the new system is a conspicuous win for Defence on the healthcare front, where the government, top brass and doctors have been at loggerheads over how a $1.3 billion outsourcing contract with Medibank Health Solutions is being run. Last year the Australian Medical Association put a broadside into Defence and MHS over the outsourcing deals so called ‘preferred provider’ model, adequacy of access by Defence personnel to specialist services and its fees schedule. Although both MHS and Defence strongly rejected the AMA’s claims soon after they were made, the MHS contract again came under scrutiny after MHS’ optical subcontractor Luxottica had its $33.5 million contract terminated after it was discovered details of Defence personnel had been offshored despite data protection rules. That incident prompted the AMA to call for a full audit of the MHS contract. On the civilian front, in former AMA president Steve Hambleton, a vocal critic of the MHS outsourcing deal at Defence was appointed to replace David Gonski as the chair of NeHTA. [post_title] => Return of JeHDI makes Defence Australia’s eHealth leader [post_excerpt] => Costs double but project clears delivery room. [post_status] => publish [comment_status] => open [ping_status] => open [post_password] => [post_name] => return-jehdi-makes-defence-australias-ehealth-leader [to_ping] => [pinged] => [post_modified] => 2014-09-26 12:30:26 [post_modified_gmt] => 2014-09-26 02:30:26 [post_content_filtered] => [post_parent] => 0 [guid] => http://www.governmentnews.com.au/?p=16403 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [4] => WP_Post Object ( [ID] => 15548 [post_author] => 671 [post_date] => 2014-06-26 15:32:37 [post_date_gmt] => 2014-06-26 05:32:37 [post_content] => Monitor High profile corporate and education leader David Gonski has stepped down from his role as the chairman of the National eHealth Transition Authority and will be replaced by the immediate past president of the Australian Medical Association (AMA), Dr Steve Hambleton. The changing of the guard comes as the cross-government body tasked with making a national electronic health and medical records scheme a functional reality faces a pivotal year after its funding was extended for just one year in the federal Budget. The departure of Mr Gonski was widely anticipated as he is ineligible to serve a third term as chairman under NeHTA’s constitution. Mr Gonski, whose name has since become synonymous with the ambitious education reforms of the former Labor Federal government, became the NeHTA’s chairman in 2008 and is widely credited with keeping the massive and frequently challenged project alive through his quiet but formidable style of diplomacy. His succession by Dr Hambleton is a clear sign that NeHTA’s stakeholders – which essentially comprise of state health authorities, the federal government and the medical sector – have opted for a stronger influence from clinicians who have repeatedly taken both NeHTA and the Federal Department of Health to task over the usability of the technology that NeHTA is creating. Doctors staged a landmark intervention over the slow progress and questionable usability of Australia’s decade-long $1 billion effort to build a functional eHealth system less than a year ago. In August 2013 clinical advisors to the project, including respected eHealth advocate and former AMA president Dr Mukesh Haikerwal, staged an unprecedented walk-out from the project, a move which in turn forced crisis talks between the Australian Medical Association and federal Department of Health Secretary Jane Halton to resolve usability and technical issues. Immediately following those talks, Dr Hambleton who was then the head of the AMA, told Government News that clinical utility would be what ultimately drove eHealth uptake, comparing the system that had been built to a railway line with no rolling stock. “We can’t be driven by the techos,” Dr Hambleton said in August. An official statement from NeHTA on Dr Hambleton’s appointment said that the clinical expertise and leadership the former AMA heads will bring to the role “will be vital in ensuring that eHealth becomes widely adopted in clinical settings across Australia.” One of the first policy steps that is anticipated from federal Health Minister Peter Dutton is the prompt reconsideration of whether the Personally Controlled Electronic Health Record can succeed using the present ‘opt-in’ enrolment system (where patients need to ask for an electronic record to be created) or should be changed to an opt-out model (whereby eHealth records are issued by default, with patients given the choice of excluding themselves). Clinicians have long argued that the op-out model was the more preferable and logical option for speedy adoption because people are already issued paper records by default and would be less likely to go to the extra trouble of specifically asking for a new form of record. Meanwhile, stakeholders in the health sector are closely watching whether a putting a clinician in charge could prompt other management changes at NeHTA. [post_title] => Gonski steps down as NeHTA chair, replaced by Hambleton [post_excerpt] => Immediate former head of the Australian Medical Association appointed to steer national eHealth project. [post_status] => publish [comment_status] => open [ping_status] => open [post_password] => [post_name] => gonski-steps-nehta-chair-replaced-hambleton [to_ping] => [pinged] => [post_modified] => 2014-07-03 15:02:55 [post_modified_gmt] => 2014-07-03 05:02:55 [post_content_filtered] => [post_parent] => 0 [guid] => http://www.governmentnews.com.au/?p=15548 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [5] => WP_Post Object ( [ID] => 7348 [post_author] => 655 [post_date] => 2014-01-20 14:28:31 [post_date_gmt] => 2014-01-20 14:28:31 [post_content] => [caption id="attachment_8761" align="alignnone" width="614"]Perth has invested in new suburban rail. Perth has invested in new suburban rail.[/caption] By Mark Bruzzone* The concept of ‘liveable cities’ has become an increasingly used term when talking about planning and designing urban areas. The desire to tackle challenges such as population growth, climate change, urban sprawl and natural disasters whilst delivering a high quality of sustainable living for Australians has become a key objective of both public and private organisations. With tightening public budgets expected for the next few years, it is critical to ensure that all spending on our cities and urban regions is directed to the issues that matter the most and those which will have real impact on how we live and prosper as a nation. By definition liveable cities offer a high quality of life, and support the health and wellbeing of the people who live and work in them. Given that huge amounts of resources and time are being invested into developing our urban areas, it is crucial to understand what Australians themselves consider as important when choosing where to live and work. In order to ensure that, as a country, we are integrating what Australians want and need into our plans for the future, MWH Global recently commissioned a piece of independent research of households around Australia to explore attitudes and priorities with regard to what makes cities ‘liveable’. The results were fascinating. Back to basics The survey, of more than 1,000 people, found that what Australians most care about when choosing where to live is access to healthcare, followed by employment and essential services such as police and ambulance. It’s interesting that despite the rise of technology and evolution of culture which have created a highly sophisticated society in many ways, it’s actually the basic needs such as being healthy, secure and safe that matter more to Australians than lifestyle considerations. In terms of infrastructure, the most important element Australians value when choosing the city, town or suburb they want to live in is water. Water rated higher than electricity, roads or sewage. The research found that 76 per cent of Australians value water supporting infrastructure more than sewage supporting infrastructure, while 69 per cent value water more than roads and 55 per cent value water more than electricity. Across Australia, there were some state differences in key priorities in choosing where to live. For example, those in NSW were more likely to include employment and culture in their top three aspects, those from Victoria and South Australia gave a higher priority to environment, Queenslanders were more likely to name essential services as a top priority, and those in Western Australia were more likely to rank education as a key aspect in choosing where to live. Further, those living in cities were more likely to rank aesthetics in their top three most important things to have. Those living in remote areas were more likely to rank education higher. Big smoke versus the bush The research found that the key drivers motivating people to live in cities and regional centres are fairly similar, with having access to essential services and amenities (65 per cent), being in close proximity to family and friends (58 per cent) and job opportunities (52 per cent) ranked as the most important drivers. Australians living in rural or remote areas identified better transport links (57 per cent), better access to healthcare (53 per cent), more opportunities for work (46 per cent) and proximity to family and friends (45 per cent) as important factors which would improve their quality of life. The key themes of access and proximity suggest that wherever they live, Australians value the ability to quickly and easily get to what they need, whether it’s a trip to the doctor, getting to work in the morning or visiting friends and family. Not surprisingly, over 90 per cent consider high quality roads as an important priority in choosing where they want to live. In terms of where people want to live, Australia is an overwhelmingly urban nation, with 48 per cent of people saying that in an ideal world they would choose to live in an urban major city or outskirts. However, there’s clearly an element of ‘the grass is greener’, with four in ten city dwellers wanting to live in a regional, rural or remote area. It seems that money may be a crucial factor preventing those considering an escape to the country, with 51 per cent of urban residents concerned that their income would fall if they relocated out of a major city. With over half (57 per cent) of people willing to move to an area that provides them a higher quality of living, getting the basics right will be hugely important to maintain and enhance thriving communities across our nation. The lesson for regional government is to tackle the basic services such as healthcare, jobs and infrastructure in order to meet the needs of existing residents, and to encourage new potential residents to make the move. The importance of water Understandably for a country where it’s often a limited resource, water was ranked as the most important infrastructure need in choosing where to live, followed by electricity and roads. The survey found that water issues are an important part of what makes a liveable place, with 9 in 10 indicating that water management is vital in the place they live, in particularly those living in cities (94 per cent). Interestingly, there is still a major stigma associated with drinking recycled water, with almost two thirds of Australians (64 per cent) willing to pay a 10 per cent premium to have drinking water without recycled sewage in the network. Education around both the necessity and safety of different water supplies is a high priority in order to ensure we are able to maintain a sustainable water supply. The research did show that most Australians would drink rainwater harvested from their roofs. A key design aspect of our future cities will be to ensure that we maximise the fit-for-purpose use of all of the different available sources of water within the catchment. Collecting rainwater, stormwater, grey water and recycled water and using these in fit-for-purpose applications will maximise efficient water use and minimise demand on fresh water drinking supplies. Aside from drinking water, the research demonstrated that people place a real value on the cultural aspects of water for activities such as for recreation. While utilities and regulators rightly place public health as of utmost importance, other factors should be elevated as well. We also investigated what people are looking for in the future of our cities. Access to safe tap water for drinking was ranked as the most important aspect of where people will live in 30 years, highlighting the need to ensure that quality water and supporting infrastructure is available now and into the future. Tackling transport problems Getting public transport right is a very important part of creating liveable cities. People want to live closer to work so they have a choice of transport modes (buses, trains, cycle, walkways, and roads). However, our cities have historically sprawled to maintain affordability, and the cost of supplying public transport increases as a result. Poor urban planning can inevitably create segments of disadvantaged communities. Those on the fringe are often shackled by a lack of transport choice, shops, childcare and healthcare. The way we connect our communities to services is critical in creating liveable communities. The research found that while 54 per cent believe they get good value from the public money spent on roads in their local area, nearly all Australians (91 per cent) believe that road networks will need to be maintained and operated efficiently to make an area liveable. If there was public transport within one kilometre of where Australians live and work, 77 per cent would actually use it. Those living in cities are more likely to agree (81 per cent). In our regional areas where access to funding is limited and the majority of wear and tear on roads is created by passers-by, road safety and maintenance is often low on the priority list of allocating public funds. Federal government grants such as the Blackspot Program are one way local councils can access funds to improve the overall safety of our roads. Prioritising spend When asked what they believe government spending priorities should be, Australians placed healthcare (17 per cent), essential services such as fire and police (13 per cent) and education (12 per cent) as top budget items. Ranked fourth was water; with a similar proportion to roads and electricity, but a higher spend than sewage, environment, aesthetics or culture. In terms of their own water bills, Australians identified upkeep of pipes (61 per cent), cost of water supply sources (57 per cent) and cost of filtering water (54 per cent) as the top three priorities for water payment. An overwhelming 81 per cent of Australians believe road safety should have higher funding priority. Those living in regional areas (86 per cent) are more likely to believe road safety should have higher funding priority than those living in the cities and remote areas. Understanding community priorities for infrastructure spend and balancing this with funds available is the critical task for regional government. The ability to identify changing community expectations, understand customer and community values and accordingly adjust service is a major challenge but is what will enable us to deliver sustainable, liveable cities that maintain, attract and meet the needs of Australians now and in the future. The task ahead The research findings present significant implications for tackling the challenges of urban planning. For the first time, we have a clear picture of what Australians want from their cities, which is a valuable tool for planning and prioritising resources for the future. In light of challenges such as increasing natural disasters, climate change and population growth, governments needs to take a long-term approach in order to build a more sustainable environment for people to live in. This coupled with delivering the services and amenities most valued by Australians, should be at the heart of urban planning. This is a joint task for government, councils, state departments and service providers as we seek to design resilient communities and cities for the future. *Mark Bruzzone is Managing Director, Government and Infrastructure Australia, MWH Global. 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[caption id="attachment_27770" align="alignnone" width="300"] You create a lot of healthcare data during your life. What happens after it? Tewan Banditrukkanka/Shutterstock[/caption] Jon Cornwall, Victoria University of Wellington Death is inevitable. The creation of healthcare records about every complaint and ailment we seek treatment for is also a near-certainty. Data about patients is a vital cog in the provision of efficient health services. Our study explores what happens to those healthcare records after you die. We focus on New Zealand’s legal situation and practices, but the issue is truly a global one.
Read More: Decades on from Henrietta Lacks, we’re still struggling to find an adequate consent model
Previously, healthcare records were held in paper form and stored in an archive. Next came the advent of digital storage in on-site databases. When you died, your records were either shredded or erased, depending on the technology. But it is now increasingly common for healthcare records to be digitised and held in a central repository. They can potentially be held for an indefinite period after someone dies, depending on the jurisdiction. Should we be worried?

A question of value

Large, population-based healthcare data sets have immense value. This is particularly true of records that include genomic information alongside other healthcare data – a phenomenon that will only increase as information about a person’s genes is more widely used in clinical treatment. These posthumous healthcare data sets, which will grow in size and detail over the coming decades, could tell us a great deal about diseases and heritability. Data sets from generations of families and communities may well be available for research, and able to be analysed. Information on this scale is worth a lot, especially for data storage companies and those with a financial interest in these data sets, such as pharmaceutical companies. Imagine, for instance, if a company could quickly analyse millions of genomes to isolate a disease that could be cured by an engineered pharmaceutical, and the commercial value this would create. So how will this affect the individual whose data is held and their surviving family? Many people would be willing to donate medical records if the downstream result was beneficial for their community and country. Yet the lines become easily blurred. Would it be acceptable if data sets were sent to foreign companies? What if they provided a cure free of charge to the families of citizens whose data they used? How about if the cure was half price, or full price, but the other option was having no cure at all? Would it be all right for companies to make millions of dollars out of this information? There is no easy answer. [caption id="attachment_27771" align="alignnone" width="300"] Every time you visit a doctor’s office, you create data. Keith Bell/Shutterstock[/caption]

What’s the legal situation?

It’s impossible to talk about the long term fate of healthcare data without considering privacy and consent. As part of medical research, for example, participants are required to provide informed consent and often the gathered data are anonymised. Access to posthumous medical records, on the other hand, is not highly regulated or protected in most countries, and the laws surrounding access are incredibly unclear. In New Zealand, a deceased person has no privacy rights under the Privacy Act. And while healthcare data has to be held for a minimum of 10 years after death, the regulatory body which is then custodian of that data may decide - broadly - what purposes it may be used for. Given that the custodian can be anyone from a health board or local doctor to a commercial institution that stores health records, the situation is exceedingly vague.
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It is often argued that use of anonymous data sets do not require consent from an individual – in our case, a deceased person cannot provide this anyway. However the lines of true “anonymity” are becoming more blurred, particularly thanks to genomics. Your own genome is partly that of your family and relatives. They may also have an emotional stake, and possibly a legal stake, in any action or research where the genome of a deceased family member is involved. The medical profession has not always dealt well with consent and ethics issues. In one infamous case, the cancer cells of Henrietta Lacks – a 31-year-old American woman who died of cervical cancer in 1951 – have been used thousands of times in research projects. She unwittingly made an invaluable contribution to global health, yet she never consented and her family was not consulted. Then there is the fact that if large data bases are readily available, the possibility of data linkage increases – matching data sets that may belong to the same person – potentially undermining the ability to maintain true anonymity for the individual and their family.

What happens now?

The New Zealand and Australian governments have signalled that healthcare data are a widely underused resource. Commercialisation of such data is a possibility. At some point, large posthumous healthcare data sets from these countries could potentially be accessed by researchers and private institutions around the world. It is time for the public to decide what they think is reasonable. If the use of posthumous healthcare data is not aligned with the wishes of society, especially its desire for anonymity, the trust between our healthcare providers and patients may become compromised. The ConversationHealthcare data sets have immense value, but the public must be consulted about their use. Only then can the potential of posthumous healthcare data sets be properly realised. Jon Cornwall, Senior Lecturer, Faculty of Health, Victoria University of Wellington This article was originally published on The Conversation. Read the original article. [post_title] => Healthcare records: take them to the grave? [post_excerpt] => Our healthcare records outlive us. It's time to decide what happens to the data once we're gone. [post_status] => publish [comment_status] => open [ping_status] => open [post_password] => [post_name] => 27766 [to_ping] => [pinged] => [post_modified] => 2017-08-07 15:08:17 [post_modified_gmt] => 2017-08-07 05:08:17 [post_content_filtered] => [post_parent] => 0 [guid] => http://www.governmentnews.com.au/?p=27766 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [comment_count] => 0 [current_comment] => -1 [found_posts] => 6 [max_num_pages] => 1 [max_num_comment_pages] => 0 [is_single] => [is_preview] => [is_page] => [is_archive] => 1 [is_date] => [is_year] => [is_month] => [is_day] => [is_time] => [is_author] => [is_category] => [is_tag] => 1 [is_tax] => [is_search] => [is_feed] => [is_comment_feed] => [is_trackback] => [is_home] => [is_404] => [is_embed] => [is_paged] => [is_admin] => [is_attachment] => [is_singular] => [is_robots] => [is_posts_page] => [is_post_type_archive] => [query_vars_hash:WP_Query:private] => be0eb165a34db0361d806d16caa3a074 [query_vars_changed:WP_Query:private] => 1 [thumbnails_cached] => [stopwords:WP_Query:private] => [compat_fields:WP_Query:private] => Array ( [0] => query_vars_hash [1] => query_vars_changed ) [compat_methods:WP_Query:private] => Array ( [0] => init_query_flags [1] => parse_tax_query ) )

healthcare

healthcare

Perth infrastructure, Western Australia, 23 Oct. 2010

What Australians want from urban planning and design

By Mark Bruzzone* The concept of ‘liveable cities’ has become an increasingly used term when talking about planning and designing urban areas. The desire to tackle challenges such as population growth, climate change, urban sprawl and natural disasters whilst delivering a high quality of sustainable living for Australians has become a key objective of both […]