NSW Health has a limited understanding of the quantity and quality of palliative care services across the state.
WP_Query Object ( [query] => Array ( [tag] => health ) [query_vars] => Array ( [tag] => health [error] => [m] => [p] => 0 [post_parent] => [subpost] => [subpost_id] => [attachment] => [attachment_id] => 0 [name] => [static] => [pagename] => [page_id] => 0 [second] => [minute] => [hour] => [day] => 0 [monthnum] => 0 [year] => 0 [w] => 0 [category_name] => [cat] => [tag_id] => 11416 [author] => [author_name] => [feed] => [tb] => [paged] => 0 [meta_key] => [meta_value] => [preview] => [s] => [sentence] => [title] => [fields] => [menu_order] => [embed] => [category__in] => Array ( ) [category__not_in] => Array (  => 22371 ) [category__and] => Array ( ) [post__in] => Array ( ) [post__not_in] => Array ( ) [post_name__in] => Array ( ) [tag__in] => Array ( ) [tag__not_in] => Array ( ) [tag__and] => Array ( ) [tag_slug__in] => Array (  => health ) [tag_slug__and] => Array ( ) [post_parent__in] => Array ( ) [post_parent__not_in] => Array ( ) [author__in] => Array ( ) [author__not_in] => Array ( ) [ignore_sticky_posts] => [suppress_filters] => [cache_results] => 1 [update_post_term_cache] => 1 [lazy_load_term_meta] => 1 [update_post_meta_cache] => 1 [post_type] => [posts_per_page] => 14 [nopaging] => [comments_per_page] => 50 [no_found_rows] => [order] => DESC ) [tax_query] => WP_Tax_Query Object ( [queries] => Array (  => Array ( [taxonomy] => category [terms] => Array (  => 22371 ) [field] => term_id [operator] => NOT IN [include_children] => )  => Array ( [taxonomy] => post_tag [terms] => Array (  => health ) [field] => slug [operator] => IN [include_children] => 1 ) ) [relation] => AND [table_aliases:protected] => Array (  => wp_term_relationships ) [queried_terms] => Array ( [post_tag] => Array ( [terms] => Array (  => health ) [field] => slug ) ) [primary_table] => wp_posts [primary_id_column] => ID ) [meta_query] => WP_Meta_Query Object ( [queries] => Array ( ) [relation] => [meta_table] => [meta_id_column] => [primary_table] => [primary_id_column] => [table_aliases:protected] => Array ( ) [clauses:protected] => Array ( ) [has_or_relation:protected] => ) [date_query] => [queried_object] => WP_Term Object ( [term_id] => 11416 [name] => health [slug] => health [term_group] => 0 [term_taxonomy_id] => 11416 [taxonomy] => post_tag [description] => health [parent] => 0 [count] => 90 [filter] => raw ) [queried_object_id] => 11416 [request] => SELECT SQL_CALC_FOUND_ROWS wp_posts.ID FROM wp_posts LEFT JOIN wp_term_relationships ON (wp_posts.ID = wp_term_relationships.object_id) WHERE 1=1 AND ( wp_posts.ID NOT IN ( SELECT object_id FROM wp_term_relationships WHERE term_taxonomy_id IN (22364) ) AND wp_term_relationships.term_taxonomy_id IN (11416) ) AND wp_posts.post_type = 'post' AND (wp_posts.post_status = 'publish') GROUP BY wp_posts.ID ORDER BY wp_posts.post_date DESC LIMIT 0, 14 [posts] => Array (  => WP_Post Object ( [ID] => 27860 [post_author] => 670 [post_date] => 2017-08-18 09:53:31 [post_date_gmt] => 2017-08-17 23:53:31 [post_content] => The Auditor-General for New South Wales Margaret Crawford has released her report, in which she finds that NSW Health’s approach to planning and evaluating palliative care is not effectively coordinated. There is no overall policy framework for palliative and end-of-life care, nor is there comprehensive monitoring and reporting on services and outcomes. “NSW Health has a limited understanding of the quantity and quality of palliative care services across the state, which reduces its ability to plan for future demand and the workforce needed to deliver it,” said the Auditor-General. “At the district level, planning is sometimes ad hoc and accountability for performance is unclear.” Local Health Districts’ ability to plan, deliver and improve their services is hindered by:
- Multiple disjointed information systems and manual data collection.
- Not universally using a program that collects data on patient outcomes for benchmarking and quality improvement.
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 valueLarge, 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. Healthcare 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 )  => WP_Post Object ( [ID] => 27740 [post_author] => 670 [post_date] => 2017-08-01 10:32:28 [post_date_gmt] => 2017-08-01 00:32:28 [post_content] => Victoria’s Voluntary Assisted Dying Ministerial Advisory Panel (the Panel) has been working on developing a safe and compassionate voluntary assisted dying framework for Victoria. The Legislative Council’s Legal and Social Issues Committee (the Parliamentary Committee) provided a broad policy direction for voluntary assisted dying that focused on allowing a person to self-administer a lethal dose of medication. The role of the Panel was to consider how this could work in practice and to ensure only those making voluntary and informed decisions and at the end of their life could access voluntary assisted dying. The Panel determined that voluntary assisted dying implementation should be considered in the context of existing care options available to people at the end of life. Guiding principles In formulating its recommendations, the Panel relied on a number of guiding principles. These principles are that:
- Every human life has equal value.
- A person’s autonomy should be respected.
- A person has the right to be supported in making informed decisions about their medical treatment and should be given, in a manner that they understand, information about medical treatment options, including comfort and palliative care.
- Every person approaching the end of life should have access to quality care to minimise their suffering and maximise their quality of life.
- The therapeutic relationship between a person and their health practitioner should, wherever possible, be supported and maintained.
- Open discussions about death and dying and peoples’ preferences and values should be encouraged and promoted.
- Conversations about treatment and care preferences between the health practitioner, a person and their family, carers and community should be supported.
- Providing people with genuine choice must be balanced with the need to safeguard people who might be subject to abuse.
- All people, including health practitioners, have the right to be shown respect for their culture, beliefs, values and personal characteristics.
- be an adult, 18 years and over; and
- be ordinarily resident in Victoria and an Australian citizen or permanent resident; and
- have decision-making capacity in relation to voluntary assisted dying; and
- be diagnosed with an incurable disease, illness or medical condition, that:
- is advanced, progressive and will cause death; and
- is expected to cause death within weeks or months, but not longer than 12 months; and
- is causing suffering that cannot be relieved in a manner the person deems tolerable.
What we know so farThe leaked plan’s reported headline proposal is that the government rebate, which aims to encourage people to take out private health insurance, be transformed into a direct private hospital subsidy. In other words, the private health insurance rebate – which subsidises up to 35% of the cost of both hospital and general (ancillary) insurance – would be abolished, as would the Medicare rebate for medical services for private patients in hospitals. Instead, a new rebate would be paid directly to private hospitals, with the level of the payment depending on the type of treatment and procedures provided. Similarly, Commonwealth block grants to the states for public hospital care would be replaced by a direct payment to public hospitals, again depending on the treatments and procedures provided. The Commonwealth Hospital Benefit would work in a similar way to the Medicare Benefit Schedule. So the Commonwealth would publish a list of fees it would pay for particular types of hospital care. These fees would be equally available to public and private hospitals. Presumably the fees would be based on what is called the National Efficient Price – currently used to determine Commonwealth payments to states for increases in public hospital activity – published by the Independent Hospital Pricing Authority. Basing payment on a National Efficient Price will help make the private hospital sector more efficient, in the same way that it has improved efficiency in public hospitals.
Neat and tidy, but…A Commonwealth Hospital Benefit would certainly be neat and tidy. It would increase transparency of Commonwealth funding support for both public and private hospitals. And it would replace the complex arrangements for private hospitals, where Commonwealth support for private hospital care is partly channelled through private health insurers and partly offered through the MBS rebate and the Pharmaceutical Benefits Scheme (PBS). But important questions remain. At present, Commonwealth support for public hospitals is capped: it can grow no faster than 6.5% each year. Commonwealth support for private insurance, however, grows with any growth in membership; and growth in MBS and PBS outlays is uncapped. Will the proposed scheme be capped? If so, how? Current Commonwealth support for public hospitals is conditional on there being no out-of-pocket costs to patients. Would the new scheme retain that condition? Similarly, the Commonwealth’s indirect support for private hospitals is available only to those with private health insurance – because it is paid through the private health insurance rebate. About 7% of overnight-stay patients and 9% of same-day patients in private hospitals pay in full for their own care.
Further reading: The multi-billion-dollar subsidy for private health insurance isn’t worth it
Will these patients also become eligible for Commonwealth subsidies? That is, will the new private hospital subsidy be available only to those with private insurance and, if so, will any type of private insurance fulfil this condition? Fairfax claims the leaked report suggests that, on current modelling, the share of Commonwealth support for public hospitals might decline from around 40% now to around 35%. This would require the states to devote a bigger proportion of their already tight budgets to health care. The premiers could be expected to object loudly to any reduction. They might pass on the budget cut to public hospitals, and sheet home the blame to the Commonwealth. Certainly, the political optics for the federal Coalition – still reeling from Labor’s 2016 election “Mediscare” campaign – would not be good.
What about private hospitals?Private hospitals and doctors might also not welcome the proposed arrangement. Private hospitals might enjoy the reduced scrutiny by private insurers, but some negotiations would presumably still be needed between insurers and hospitals about what level of out-of-pocket costs members could face. Private hospitals might also become responsible for paying medical rebates to surgeons, psychiatrists and other doctors who treat patients in their hospital. The private hospital administrators might find dealing with insurers much easier than negotiating how to divide the new “hospital benefit” between the doctors, pharmacists, allied health staff and the hospital, all of whom currently bill separately. Alternatively, private insurers might be expected to cover these costs. Again, this would require complex negotiations on precisely what payments might be appropriate. If there was no net change in Commonwealth funding to private hospital care, the financial position of private insurers would be unchanged, because their outlays would be reduced in line with the reduction in the Commonwealth subsidy. But again, there are risks here for insurers. If the benefit was available to all patients, and not just the insured, private insurers might lose business as members downgrade to the minimum acceptable product. And it could become harder for insurers to persuade people to take up private insurance, given many people see the current private health insurance rebate as ensuring they get value for money from their insurance purchases. There are good reasons to want to simplify and make more transparent the extremely complex flows of Commonwealth funding to both public and private hospitals. But there are also risks in the change. [post_title] => Why the seemingly tidy, leaked proposal for hospital funding may be a problem policy [post_excerpt] => Will the scheme be capped? [post_status] => publish [comment_status] => open [ping_status] => open [post_password] => [post_name] => 27254 [to_ping] => [pinged] => [post_modified] => 2017-05-30 12:50:23 [post_modified_gmt] => 2017-05-30 02:50:23 [post_content_filtered] => [post_parent] => 0 [guid] => http://www.governmentnews.com.au/?p=27254 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw )  => WP_Post Object ( [ID] => 27229 [post_author] => 658 [post_date] => 2017-05-25 15:35:09 [post_date_gmt] => 2017-05-25 05:35:09 [post_content] =>
- Multiple disjointed information systems and manual data collection.
- Not universally using a program that collects data on patient outcomes for benchmarking and quality improvement.
Our healthcare records outlive us. It’s time to decide what happens to the data once we’re gone.
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