Consumers Health Forum of Australia | Consumers shaping health
We are your voice in national health debates. CHF is the national peak body representing Australian healthcare consumers. We work to achieve safe, quality, timely healthcare for all Australians, supported by accessible health information and systems.
A survey conducted by CHF has revealed that more action is needed to improve the way people get their information about their medicines.
The Federal Minister for Health, Greg Hunt, has raised the issue of how consumers can better access information about the medicines they take. He has asked the Therapeutic Goods Administration (TGA) to work with all key stakeholders to look at how the consumer medicines information leaflets (CMIs) can be improved to make them more consumer friendly.
CHF, along with Health Issues Centre, attended a TGA hosted workshop of key stakeholders to work through alternative models for the CMI. Representatives from manufacturers, industry associations, academics, pharmacists and other health providers, consumer organisations and TGA staff participated in the workshop.
Hopefully this work will lead to the information being presented in a more consumer friendly way and empower consumers to make informed decisions about their personal health care.
As part of our preparation for the TGA workshop, the CHF ran a survey through Australia’s Health Panel asking for consumer experiences with CMIs and about the way they get information about prescription medicines, getting over 100 responses in just under two weeks.
The preliminary results showed more action is needed to improve the way people get information about their medicines. The majority of people said when they were given a new medicine they were not provided a CMI by their doctor (91%) or pharmacist (60%). Additionally most respondents (91%) reported their pharmacist had not even advised them where they could access the CMI. This is consistent with other work showing people do not get always get the CMI.
The CHF survey also found that when given CMIs less than half of the respondents thought the CMIs readable (42%) or useful (46%) which reinforced other work CHF and others have done on this issue.
Of note was that the vast majority of respondents (91%) believed that provision of CMIs by either a doctor, a pharmacist or both should be mandatory. Physical copies were preferred by a significant majority (84%) of respondents, while a minority wanted electronic (35%) or online (35%) versions provided.
The CHF survey also showed that a concerning 1 in 3 consumers did not have a conversation with either their doctor or pharmacist about the safe and effective use of the medication. More concerning was that of those who did speak with their doctor or pharmacist, barely half (52%) reported that the conversation was useful. This means that overall more than half of consumers do not have their pharmacist or their doctor talk to them in adequate detail about the medicine. CHF will continue to work with pharmacists and doctors to improve this situation.
This week’s new Report on Government Services indicates that Australia’s publicly-funded health services are performing passably well in meeting demand - but could do better.
It provides yet more evidence highlighting the need for changes in primary health care that the Consumers Health Forum have been calling for in recent years.
The report shows once more that while most people can get the health care they seek in reasonable time and at moderate cost, a significant minority face barriers that should not be acceptable in an equitable, universal health system that we wish for in Australia.
For instance, the report, compiled by the Productivity Commission, finds that overall 19.2 per cent of people who saw a GP waited longer than they felt was acceptable. Waiting times for public dental care remain painfully high for those in need - in some states almost two years.
Four per cent of people said they delayed or did not visit a GP in the past 12 months because of cost, also a reason seven per cent cited for not getting medicine they were prescribed.
Cost is also likely to be a factor in why there were 2.9 million visits to public hospital emergency departments in 2017-18 which were potentially avoidable and could have been managed in the primary and community health sector.
Health budgets have continued to rise but failings like those above continue to exclude many Australians from the care they need.
These figures provide the evidence if any more were required to make the case for change.
CHF has worked with expert groups and consumer advocates to press for reforms that while requiring some additional investment would deliver healthier and happier outcomes for consumers and taxpayers at a not unreasonable cost, and potential savings in reduced care costs longer term.
Australia needs reforms to our primary health care system that include provision of accessible and affordable care for chronic illness, available afterhours care and more support for self-management of care.
Last year, CHF in partnership with The George Institute for Global Health and the University of Queensland-MRI Centre for Health System Reform and Integration, produced a report based on the results of roundtable discussions involving Australian leaders in primary care and quality medicine.
It proposes a shift away from the present fee-for-service system of payment to doctors towards the patient and family health care home model of integrated and team-based care, particularly for the chronically ill, a model now being trialled in Australia to focus payments more directly on outcomes of care.
One of the great hurdles to a better health system in Australia is the funding divide between federal and state and territory governments. Our 2018 report suggests strengthening Medicare through the development of regional budgets combining funding from all levels of government.
The ten priorities set out by our report advance a variety of other reforms which include empowering Primary Health Networks and Local Hospital Networks or equivalent bodies, to improve regional performance and consumer-centred services.
The report recommends a Consumer Enablement Portal: an online resource to promote access to promote consumer knowledge and empower them to get the best out of the health system.
CHF has further developed that theme in proposals for change in its submission to the 2019 Federal Budget. This includes the development of Co-Creating Health Australia and other initiatives to support people with chronic conditions to actively manage their own health; to equip those at risk of chronic disease with practical steps to lower that risk; and to support doctors, nurse practitioners and other practitioners to engage with parents to support healthy early childhood development.
The evolution we seek is to invigorate not only consumer-centred care but also the role individual consumers can play in becoming better informed and confident to manage their disease and not feel quite so compelled to go to the hospital ED, particularly if their GP is not open.
By becoming more knowledgeable about their own disease and what services are available, consumers should become aware of such services as the Healthdirect nurse triage line and know about local services such as nurse-led walk-in centres.
Not least, Australia urgently needs a national strategy to counter the modern-day challenge of obesity that will curb consumption of unhealthy food and drink and convince us of the importance of healthy diet and lifestyle.
The evolution we seek is outlined in our White Paper: Shifting Gears where we outline eight fundamental shifts needed for better patient and person-centred care.
Empowering us all to know more about our health and how to keep it will make for a better Australia.
With that in mind, here are 10 thoughts for what we would like to see in 2019:
PREVENTION: Government realising that prevention policy, and investment in it, yields the best health returns for Australians.
HOSPITAL EVOLUTION: Working towards hospitals of the future, focused on care in the community that won’t look and function anything like the current model.
INTEGRATION: Gearing our system to better manage multimorbidity, and bringing together mental health and physical health in primary care services as a focus; striving for a fusion of health and community services to address all factors that determine health.
LISTENING TO US: Serious investment in consumer voices and leadership development.
PLACE-BASED LOCAL DESIGN: Ensuring provider and industry interests make way for consumers in co-design of health services, and accelerated use of Primary Health Networks and local partnerships for regional health care solutions.
YOUTHFUL: Including young voices in planning and design of Australia’s future health and wellbeing systems, and investing in early years for optimum child health, development and wellbeing
FIRST PEOPLE: Government stepping up to close the gap in health outcomes by prioritising the recommendations from the Uluru Statement From the Heart.
MEASURE: Patient reported outcomes, experiences and activation levels becoming an integral part of measuring success in the health system
EVIDENCE: Removing funding barriers in the health system to ensure people receive best practice, evidence-based care as needed from multidisciplinary health care teams
TECH POWER: Embracing and regulating the technologies that make health care more accessible and efficient for consumers
What are your thoughts for better health in 2019? Let us know at firstname.lastname@example.org
This article was first published in Croakey, a social journalism project that enables debate and investigations of health issues and policy.
With Australia’s health system it can sometimes seem that the more remedies there are proposed, the harder it gets to put them into practice.
Whether it be evidence-based benefits of consumer-centred primary care, fresh arguments in support of prevention or advances in medical science, we are learning more ways to better health.
With the digital era we have more tools than ever at our disposal to introduce modern and efficient ways to deliver health care into people’s homes. But exploiting our expanding knowledge for the benefit of all of society does not get any easier.
A compelling example of the hurdles to implementing evidence-based reforms that could generate great benefits at modest cost came this month as Parliament rose for the last time in 2018.
Australia ranks fifth highest in the world in incidence of obesity with 63 percent of adults overweight or obese. The rate for children aged up to 17 is 27 percent.
The growing prevalence of obesity has profound implications for our future health: rising diabetes, heart disease and cancer and great impacts on health expenditure and productivity.
The report noted that now 30 countries or local jurisdictions have introduced a sugary drink tax. It cited research from Diabetes Australia finding that a 20 percent levy on sugary drinks could cut consumption by 12.6 percent, resulting in 800 fewer people a year developing type 2 diabetes.
There is widespread public support for measures like a sugary drinks tax and curbing the promotion of high fat, high sugar, high salt food and drink. A survey by the 11,000-strong Parents’ Voice organisation found that 90 percent of parents favoured a sugary drinks tax. Many respondents also said that such a tax should not be done in isolation.
The committee also heard repeated mention of the Tipping the Scales report produced by the Obesity Policy Coalition, which pulled together the views of dozens of health experts yielding an eight-point national obesity strategy.
The evidence before the committee however failed to sway senators from the two major parties for varying reasons on key issues including the proposal for a National Obesity Taskforce, a tax on sugary drinks and restrictions on the advertising of junk food.
Given the scale and urgency of the obesity crisis, the many years during which the obesity issue has been debated and the existence of a comprehensive plan like Tipping the Scales, the response of Australia’s two big political parties is highly regrettable.
Several surveys in recent years have shown strong public support for concerted action on obesity. It is difficult to avoid the conclusion that many of our politicians are putting the interests of the food and beverage industry ahead of the health of the nation. What could be more important?
The Government’s response to recommendations of an independent review into community pharmacy regulation and remuneration also indicated that the interests of business had taken precedence over those of the consumer.
A recommendation to dismantle anti-competitive measures and create more support for independent professional pharmacists, though widely supported by consumers and others, failed to get government support and curtailed the opportunities that could be harnessed to maximise the integration of this trusted workforce into new, progressive ways of delivering health care in settings such as general practice and aged care facilities.
Serving industry interests
The mounting evidence of consumer frustration with the high cost and diminishing coverage of private health insurance has been another area where we should question whose interests are being best served.
An issue that has prompted a response from Government has been out of pocket health costs. A survey by CHF, Out of Pocket Pain, earlier this year showed that many people with insurance incurred out of pocket bills on top of their insurance premiums running into thousands of dollars.
The Health Minister established a review into out of pocket costs and CHF has proposed the establishment of an authoritative web site in which specialists would publish their fees. That would be a welcome step along the path to greater transparency.
The economic dynamics and supply and demand of health care remain hard to decipher and CHF has argued long and hard for a Productivity Commission inquiry into private health insurance including a look at government assistance for health insurance, which, depending on how you measure it, ranges between $6 billion and $10 billion.
The question of value for money poses challenges in most corners of health care. For some years CHF has supported primary health care reform to develop better coordinated and accessible care in the community, particularly for the chronically ill and those who are higher users of health care such as families with children.
The Government has a trial underway for its Health Care Homes initiative which makes significant changes to the way doctors are paid. Rather than being paid a fee for each service, participating GPs receive bundled or blended payments to encourage wrap-around care rather than one-off episodic sessions under traditional fee for service arrangements.
Ripe for reform
The time is ripe for our political and other leaders to transform the health system to ensure it is sustainable, effective and leads to greater satisfaction for consumers and practitioners. That was the finding of the ‘Snakes and Ladders’ report we published recently with The George Institute for Global Health and the University of Queensland MRI Centre for Health System Reform Integration.
The report identified aims including a consumer-centred approach, equitable access to continuity of integrated care and coordination of services with other health social and economic sectors which impact on wellbeing of people.
We have seen recent welcome signs from the Federal Government of a change of emphasis to hospital and community funding and would encourage the Opposition to give more attention to services outside hospital.
The past year shows that there is still more to be done to get Australia on a progressive, forward-looking health policy footing: one that pursues measures based on what we know works but isn’t afraid to take some risks to innovate and ‘push the envelope’.
We need strong and informed consumer leadership and engagement to advocate for evidence-based services and policy and that requires public investment in organisations like ours and other NGOs and in the consumers leaders of the future.
People power, persistence and conviction-based policy are the characteristics that have marked successful policy shifts in the past if we think for instance of the decades-long battle it has taken to implement anti-tobacco measures.
It is time for brave policy and for pledges to be made to translate policy into services that will future proof our health system so that it delivers the best care possible to the community.
As CHF said in our White Paper, Shifting Gears: Consumers transforming health, released as we signed off on 2018, it is time to ‘shift gears’ and strive for the policy developments we know will shape a better system and, equally importantly, invest in informed consumer leaders who can serve as agents of that change.
Recent media reports have exposed the worrying incidence of faulty medical devices around the world and in Australia. When things go wrong, the impact on a person’s ability to work and enjoy a fulfilling life can be profound and game changing. What these reports did not highlight is the disturbing prospect that the regulation of these products is a rapidly growing and increasingly complex challenge for society.
The range of adverse and unexpected glitches and catastrophes that can bedevil medical technology continues to expand along with the phenomenal variety of new devices streaming into health care. Already drawing deep attention from top medical experts – and investment houses – are developments many consumers may never have heard of, let alone understand.
These include innovations such as 3D printing which can enable the creation of fresh tissue and even body organs, “Google brain”, a dramatic advance in artificial intelligence that is expected to offer huge advances in diagnostics, genomics utilizing genetic knowledge in healthcare, and nanomedicine which uses microscopic particles circulated in the body for diagnosis and treatment.
Imagine for a moment the effort, organisation and expertise that a regulatory system will need to keep on top of these breakthroughs in the face of the clamor from the health sector and patients for the life-saving and life-enhancing benefits these innovations can offer.
The challenge of regulating future technology was a theme of the Consumers Health Forum journal, Health Voices, which last year devoted an edition to medical technology.
The suffering experienced by thousands of Australian women as a result of harms wrought by vaginal mesh and the complications in rectifying the treatment was a trigger for the Health Voices edition.
Several expert authors made the point that regulating medical devices is becoming ever harder, not just because of the explosion in new technology but also because of the elusive nature of the exponential development and modification of existing technology. While original products may have undergone regulatory scrutiny, the fierce commercial contest to offer new features can transform the original product, opening new risks.
All of this poses a challenge for society, as public policy seeks to balance the community’s access to the many benefits of medical progress with its protection from risk and harm.
There is a tendency to sheet much blame on to the regulator, which in Australia is the Therapeutic Goods Administration, for failing to act to prevent the use of questionable products.
But the speed and complexity of the introduction of medical technology, demands fresh levels of scrutiny from manufacturers, researchers, clinicians and, not least us, the consumers.
The recent media report said that almost 83,000 people have died around the world, 170 of them in Australia in the past decade, due to potentially dangerous medical devices. And despite Australia’s relatively effective regulatory arrangements, many thousands more in Australia alone suffer unexpected ill-effects of medical devices.
The ABC reported in its series, The Implant Files, cases of hazardous devices, including certain types of textured breast implants which had been linked to a form of lymphoma, a rare blood cancer, but that only 29 of 72 cases of this type of cancer linked to the implant had been included in the TGA data base. Despite the rise in cases of the new type of lymphoma between 2012 and 2015, the TGA was reported to have said that “the totality of the evidence presently available” indicated the implants were “safe and effective”.
The TGA website list of its alerts involving medical devices indicates 14 items, ranging from thermometers to ventilators, have been the subject of alerts to clinicians and consumers this year. Alerts can be reported to the TGA via the following links –
The TGA has a risk-based approach to regulation. As it says, it would be inefficient to regulate a tongue depressor with the same rigour as a pacemaker. The TGA states that the extent of regulation depends on:
* The intended purpose of the device
* The degree of risk the device poses to the patient
* The degree of risk the device poses to the user and those in the vicinity
* Whether the device is used internally or externally to the patient
* The duration of use.
Earlier this century in Australia, many hundreds of people suffered chronic pain and disability as a result of the “metal on metal” hip replacement prostheses that surgeons continued to implant despite rising evidence of the product’s problems. The unsettling aspect of that episode was that the suspect products remained on the market and in use for some years despite the rising rate of adverse outcomes recorded in a national register that tracks the rate of “revisions” or repeat replacements of joint prostheses. The upside is that the national joint replacement register has been associated with an overall fall in the rate of revisions over the years as a result of its data identifying better, and poorer, performing prostheses.
On the wider scene of medical device regulation, the Consumers Health Forum proposes a range of measures, including:
* The mandatory reporting by medical practitioners of adverse events and side effects of medical devices. It does the medical profession no credit that, in the face of the pervasive influence on their own profession and on patients to use medical devices, that measures to compel doctors to report problems with devices are not mandatory
* The need for more education and support for consumers to report problematic devices
* Support for the introduction of consumer device information already being introduced including timely and well targeted patient information to identify potential risks before devices are implanted (with patient information being updated following adverse event reporting)
* A registry of all implanted devices, including information on patient, surgeon, and device identification to enable follow-up with consumers who have implanted devices in the event of safety and efficacy issues
* A more effective and practical way to administer a financial penalty system for manufacturers of faulty devices and requirements on manufacturers to replace faulty devices at their own cost to protect consumers
The impressive advances in medical technology offer great benefits to millions of people and that trend seems likely to accelerate the revolution in healthcare. In fact, as citizens in a developed country such as Australia, consumers have every right to expect access to be best health technology medical science can offer.
It is clear that to safeguard Australian consumers and mitigate the risks of any downsides of this new and rapidly evolving era of technologically-aided healthcare, we need vigilant public policy that keeps well ahead of the development pipeline and more rigorous measures, including more resources for the TGA to enforce them.
We find ourselves right now at a pivotal point in the development of Australia’s most important digital health project: The My Health Record.
The move of the MHR program towards the “opt out” deadline next week has focused critical scrutiny on issues of access, security and privacy to, and of, personal health information.
I won’t rehearse the pros and cons of these arguments here but would like to examine the subject of digital health from the standpoints of two competing perspectives.
Those perspectives are, would you believe, digital and health.
One of the features of the current discussion is that the two dominant sometimes opposing groups in the MHR debate can be somewhat generally, but not always, defined by the digital side coming from an expertise and familiarity with the technology, while the other tends to hail from the health sector, clinicians and administrators.
The digital experts appear more likely to voice deeper concern about the frailties of the MHR, its technical vulnerabilities when it comes to privacy and security.
The health professionals and advocates who have had some experience with the healthcare side of MHR tend, but not always, to express optimism about its potential to improve health care.
And then there is the much larger mass of ordinary citizens in the middle who find the whole issue daunting.
I come very much from the health perspective. MHR is ultimately about people, an enabler to their health care, a tool for more effective and efficient care.
The challenges of MHR are about people. The technical challenges are significant but should be seen set against the great benefits and advances MHR enables.
And the most important challenges are more to do with people than technology.
To realise the MHR’s full potential we must deal with the attitudes and behaviours of consumers and clinicians - to overcome the ignorance and suspicion present in the digital divide and to promote uptake and meaningful use.
We must find incentives to spur doctors to take up MHR and consumers to embrace change.
We must acknowledge that we are all human with differing needs and abililties to challenge assumptions when in fact many of us do not fit the stereotype. There are teenage luddites and elderly hackers in contemporary society.
And that means consumers and clinicians engaging to develop trust, transparency and power sharing.
Most importantly, it means giving consumers the 3As: access, agency and activation. That’s consistent with contemporary thinking on consumer-directed care.
Among the challenges we are trying to resolve are those associated with disconnected care that can be reconnected with MHR and the sometimes yawning information asymmetry that exists between consumers and providers that can be overcome with a single ‘drop box’ for key health information.
We know that when patients are treated as partners in their care and decisions are taken jointly about treatment plans based on equal information, better health outcomes and experiences of care follow.
The important thing is for there to be the right information, available to the right people at the right time. Many people, including the most respected of medical specialists, remain happy to rely on printed information, but a shared e-record is easy, convenient, efficient and enables sharing.
The current debate over MHR safeguards underlines just how important it is for major new initiatives of scale to be backed by a ‘social licence’ and for safety and privacy to be strongly protected to ensure the literacy, trust and confidence needed to make MHR routine.
A central element of a successful MHR will be patient activation: something that has not been given enough attention. A disengaged patient is unlikely to embrace and reap the benefits of MHR in the same way as a patient who is motivated to take action to better self-manage and exercise choice and control over their own healthcare.
As I mentioned earlier, we need to accept and work with the reality that all patients are different. It is at the time of “healthcare moments” when consumers are with their clinician discussing their needs that individuals are most likely to embrace the benefits of MHR and digital health apps.
Our recent survey on health apps showed that people’s confidence in their GP’s advice about safety and quality is key.
Once activated, consumers need to trust that both the health records and other health information they need is at their fingertips. We need to make this easy for people and take a user experience approach to work at reducing the barriers to usable health records.
Too often we hear from consumers who support MHR only to find there is little usable information on their record. Too often we hear that they’ve nowhere to go for advice and support in between trips to the doctor once they’ve got a care plan. Digital solutions can help if MHR use is encouraged and taught and apps and online peer networks promoted.
This same research told us that consumers realise the great public good that comes from research using de-identified health data. They ask to informed about how their data will be used, to give consent, to be assured that protections are in place and that commercial use is outruled.
So at a time when trust in institutions and data security is under challenge, it becomes more important than ever that we ensure rigour and integrity as central to MHR’s success.
Trust is slow to build but easy to erode. MHR offers the opportunity to demonstrate that we do have the capacity and ambition to embed the advances of electronic information into health care for the benefit of all.
What does it mean to have a chronic condition? What do the acronyms BAU, CCF or ARP stand for? Would a new migrant understand the term bulk-billed? Among the many words submitted to the jargon blacklist for Drop the Jargon Day, these terms are often confusing and meaningless to consumers, making it difficult for them to make informed decisions about their own healthcare.
With six out of 10 adults in Australia having a low level of health literacy, the complexity of the healthcare system means that a significant gap exists between the way healthcare issues are communicated and the ability of most people to understand them. Limited health literacy can affect anyone – not just those with limited reading skills or those for whom English is a second language – and affects the safety and quality of the healthcare they receive.
When people struggle to understand some of the information they are provided about their healthcare, they may be unable to weigh up the risks and benefits of different options and make clear decisions about the care they receive. They may miss necessary tests and immunisations, make mistakes with their medications, and are at a higher risk of serious illness and hospitalisation.
Health Literacy Month in October is a time for organisations and individuals to promote the importance of understandable health information. This annual, worldwide, awareness-raising event has been going strong ever since Helen Osborne founded it in 1999 and is about taking action and finding ways to improve health communication.
What is health literacy?
Health literacy is about the way consumers find, understand, use, and act on information about health and healthcare. According to the Australian Commission of Safety and Quality in Healthcare (ACSQH), health literacy can be separated into two parts: Individual health literacy and the health literacy environment, both of which shape the way consumers understand health information and services.
Individual health literacy is characterised by a person’s skills, motivation and knowledge, and can fluctuate with circumstances. The health literacy environment includes the way health services are set up in organisations, policies and processes, the way health information is delivered and how health professionals interact with consumers.
Improving health literacy
While it is important for individuals to improve their own health literacy, organisations also need to step up to improve their health literacy environment to achieve safer, higher quality healthcare for consumers.
Consumers can become active partners in their own healthcare, by knowing the right questions to ask their healthcare providers, asking for more information when they don’t understand something, and actively seeking more information about their healthcare. The following resources can help when preparing for an appointment with a GP or specialist:
Healthcare organisations and providers can improve their health literacy environments by using a range of communication strategies and working with consumers to make sure that the information and services they provide are easy to understand and use.
Drop the jargon
Using jargon, technical terms or acronyms can make it even harder for people with low health literacy to understand and use health-related information. Drop the Jargon Day on 23 October encourages professionals in Australian health, community services and local government to use plain language, avoid acronyms, use short sentences and check for understanding when communicating with consumers. Health professionals and organisations can pledge to drop the jargon, to make it easier for people with low health literacy to get better information and outcomes from services they use.
With over 50 young people from around Australia arriving in Canberra for this exciting event, CHF’s first Youth Health Forum held on 18 and 19 September, was a huge success.
The event brought together youth leaders and nominees of youth and community organisations, with the aim of identifying the issues impacting on young people and generating recommendations to improve health system responses. When submitting their Expressions of Interest, applicants were asked to respond to questions such as naming the two biggest health issues facing Australia’s youth, and what, in their opinion would improve Australia’s healthcare system for the better.
Over 120 high quality applications were received for the forum, making it a challenge to choose 50. CHF selected attendees from a range of backgrounds and with diverse interests, levels of understanding, experiences and interactions with the health system as well as physical and non-physical conditions.
The event kicked off with a welcome dinner on the 18th, at which participants had the opportunity to meet and network. Speakers included Paige Burton (2017 Youth Representative to the United Nations), Alex Farrell (2018 AMSA President), and Harry Iles-Mann (Consumer Representative).
On 19th September, Ngunnawal elder Violet Sheridan launched the Youth Health Forum at Old Parliament House with a Welcome to Country. Facilitated by Charlie Mere from ThinkPlace, participants were encouraged to share their experiences and those of the communities to which they belong.
The eight discussion areas that were tackled were: Mental health, Overall health and well-being of young people, Funding, Understanding and navigating the system, Youth specific services, Equal access to services, Community-led support services and Technology to drive efficiencies.
For each of the themes, groups of participants developed a vision statement for the future. This culminated in a number of ‘Big Ideas’ the top four (in no particular order) of which were:
1. Curriculum changes and national minimum standards in education
2. Genuine lived experience participation in mental health
3. Smooth, patient-centred transitions from childhood to adult services
4. Compulsory mental health services for emergency services
Working with experts, four groups of participants further developed these ideas, focusing on short to medium term goals and generated a timeline for the next 12 months. Individuals also identified specific skills or activities that they could contribute to making the Big Idea happen.
CHF is currently working on a Call to Action document with the refined recommendations. There will also be a nomination and voting process to select a few attendees to present these at Parliament House.
The enthusiasm and insight of the participants was an indication of how young people want to be involved in these discussions and to be consulted in decisions that impact them.
CHF gratefully acknowledges our Forum supporters: the Medibank Better Health Foundation: headspace; Orygen; the Australian Digital Health Agency, the Australian Commission for Safety and Quality in Healthcare; the National Mental Health Commission and the Foundation for Alcohol Research and Education.
With an estimated 9 million Australians taking prescription medicine every day and more than 230,000 Australians hospitalised each year with problems caused by their medicine, it is more important than ever for consumers to be equipped with the right information and resources regarding their medication.
Introduced in 2011 as the launch event for the Be Medicinewise campaign, Be Medicinewise Week is an annual, national awareness week that promotes the safer and wiser use of medicines. This year Be Medicinewise week will be from 20–26 August, with the theme ‘Medicinewise families’, encouraging Australian families to make good decisions about medicines, medical tests and other health choices.
When medicines are a part of your life, maintaining a medicine schedule can sometimes be challenging. Starting a new medication may be confusing, and research has shown that people can be nervous or embarrassed about asking questions about their medication.
Another resource that helps keep track of important information is the free MedicineWise smartphone app, which helps people take charge of their medicines. Encouraging patients to use the app is a great way for health professionals to facilitate medicinewise behaviour for both this Be Medicinewise Week campaign and beyond.
By supporting Be Medicinewise Week, you will be able to generate conversations that inspire frequent and occasional medicine users alike to be confident about asking questions regarding their medicines, to seek out evidence-based information and to follow the right advice to get the most benefit from their prescription, over-the-counter and complementary medicines.
There are several ways you can support the NPS Medicinewise campaign and get involved in Be Medicinewise Week:
Support the campaign through social media by using the #BeMedicinewise hashtag. Use the social media guide in the toolkit for suggested social media posts
Host your own Be Medicinewise Week event at your workplace
Run by independent, not-for-profit and evidence-based organisation NPS Medicinewise, and funded by the Australian Government Department of Health, Be Medicinewise week reminds us of the importance of taking charge of our own health by asking the right questions of the right people and following the right advice. To learn more about Be Medicinewise Week and support the campaign, visit https://www.nps.org.au/bemedicinewise
This article was first published in Croakey, a social journalism project that enables debate and investigations of health issues and policy.
After years of uncertainty about the future of a nationally effective eHealth system, Australia is now preparing for the biggest step yet towards a near-universal scheme with the expansion of the My Health Record’s (MHR) reach to all people – except those who choose to opt out.
So the crunch questions about the pros and cons of MHR now take on a more immediate and direct import for the majority of Australians who have so far not signed up.
The Consumers Health Forum has strongly supported MHR and the change to an opt-out approach because we believe that, for the majority of Australians, the potential individual and national health benefits outweigh the risks that it may pose to privacy and security.
In simple terms, the more Australians who use MHR, the more use it will be to Australians.
Going for opt out makes it much more likely that MHR will become effectively universal with all the benefits of scale, interconnected care and potential for transformational change that this offers for patients and for the health system.
It should not be seen as a revolutionary or final version that solves all our problems and that never changes – it is an evolutionary step that will only get to where it needs to be with use by, and engagement of consumers and health professionals.
A common complaint of the current level of MHR information is that often it is too meagre to be of much use and that too many health providers are reluctant to use it for cost, efficiency, and change-resistant reasons.
Consumers have also regarded it as clunky, although improvements are underway.
Yet opt-out stands to bring us much more quickly to an inflection point where, for the first time, consumers en masse will have access to their records – and to personally control who sees them and under what conditions.
We see the ability to access our own records in this way as a key step in the shift from health consumers as passive patients, to consumers as active partners in their own care, exercising choice and control.
It is important to compare MHR with the record keeping we currently have, made up of fax machines and filing cabinets, not just a future possible ideal state that My Health Record could or should reach. The best way to reach the connected digital health future we want is to take part in building it.
Further, don’t just think about how My Health Record could work in our current health system: what totally transformed models of care in the future could My Health Record enable?
A somewhat comparable development in terms of population-wide impact has been the revolution triggered by electronic banking in terms of consumers’ ease of access to payments and accounts. While this has increased the risk, though still relatively low, of accounts being hacked, who would go back to the uncertainties, queues, and time-consuming transactions of pre-internet banks?
So, to the key pros and cons of the opt-out measure. There are many more than listed here, each with greater detail. You also need to consider these as they relate to your own personal circumstances, as what we have listed as a pro may be a con for you.
Both pros and cons
Centralised record keeping – Having your own and your family’s health information such as immunisations, allergies, medicines, and end-of-life wishes available for access from a central database makes it much easier to ensure it is available wherever and whenever you need it, but it may present a single target for bad actors to access a trove of individuals’ health information.
Government oversight – Less fragmentation of records than if they were managed by a number of businesses, health providers or by the individual consumer, more transparency and accountability than if managed by industry, but concerns about access by other government departments, law enforcement or future changes to legislation are reasonable.
Low maturity of digital health in Australia – My Health Record already has a lot of great features, but not all that it could. This presents an opportunity for it to be shaped and improved over time by consumers.
Complex processes – Once your My Health Record is activated, two years of Medicare, PBS, immunisation and organ donor data will load on to your record. If you activate it by logging in, you are asked if you want this to happen. But if it’s activated by a health professional uploading something to it, then it will load automatically. This means from day one of the data upload, there will be clinically relevant information available in your record. However, if you don’t want all that information available and you haven’t already nominated not to have this information uploaded, you have to actively go in and set the privacy controls. This means we as consumers have a responsibility to go in and set the controls we wish and get others to do it too.
Requires conversation and collaboration between consumers and health professionals– Your GP and pharmacist are the best people to talk to, for learning more about what My Health Record means for you. Doing so will lead to more shared decision-making and collaborative care. However, not everyone will have access to a GP or pharmacist who can talk about it, and not all those who can are able to take the time to do so.
Consumers gain access to records about them that otherwise they might not see.
It is likely to significantly accelerate the sign-up rate from the current position where after five years, only about a quarter of the population have joined.
Greater coverage by My Health Record will help deliver more responsive health care services, and propel doctors, specialists, diagnostic firms, hospitals to maximise their eHealth involvement.
Consumer access to increasingly comprehensive and timely personal health records will stimulate engagement with our care, enabling us to be better informed and more likely to take-up medical advice.
More health information available to more health professionals should stimulate better coordinated care.
Having health information collated and accessible in one place would deliver more accurate and immediately available patient data when people need care away from home and in the event of emergencies. This will enable availability of information about patients ranging from allergies to advance care directives.
The availability of population-wide and de-identified health data enabled by MHR offers huge potential, if privacy and security requirements can be met, in ascertaining what works and what doesn’t work in the health system, ranging from medication results to health provider performance.
Greater consumer control of who can access what parts of an individual’s health care information.
For a supportive view, see this from the Australian Digital Health Agency.
Opt-out removes the specific requirement for people to opt in to MHR. That will make it likely that many people automatically enrolled on to MHR will not be aware of the range of health practitioners who can access their information without their knowledge and the risks to privacy that may pose. Strict privacy controls, set by an individual, are a central feature of My Health Record. Consumers can set access controls on specific documents or their entire record, and they can set up email or SMS alerts when a healthcare provider organisation accesses their record for the first time. These controls are good but require the consumer to be aware of them and use them.
Risks and benefits are individual and context-dependent – not everyone will be able to make a good judgment on what should be in or out of their record.
Opting-out or making use of My Health Record requires that consumers have sufficient health literacy and digital literacy as well as digital access, and not all Australians do.
Consumers might not be aware of the default settings of their record – they must log in to set access codes or otherwise manage their privacy and security, and not everyone will know how or why they might want to do so.
Healthcare provider initiated uploading of two years of MBS and PBS data once a record is activated helps the completeness of your record, but doesn’t give you a choice to say no to those data being logged beforehand unless you access the record first and decide not to upload this data. Prescription information could give away diagnoses a consumer would otherwise prevent from being uploaded, and though for future data a consumer can tell their healthcare provider not to upload individual items to their My Health Record, that’s not an option for past MBS and PBS data.
In the wake of disclosures about data breaches such as the Cambridge Analytica embroglio and problems with release of Medicare/PBS data in Australia, Australians will need rock solid assurance that the privacy and security protections are world class, and will be continually improved.
The Government and/or ADHA needs to be transparent with the public about the policies and procedures they have in place around access to My Health Record information by law enforcement and other government agencies, and consider whether changes to guidelines or legislation are needed. The Agency is authorised to use or disclose health information from a My Health Record if it is reasonably necessary to prevent, detect, investigate, prosecute, or punish a criminal offence or breach of law. Transparency about the policies and procedures by which they fulfil their legislated duties will help consumers with concerns in this area understand the limits and protections built into the system.
For a critical view, see this chapter abstract from the book, Tensions and Traumas in Health Law.
A closely related issue to the My Health Record rollout has been the governance concerning third parties’ use of the wealth of data that will be generated.
The upside of such data use would be to provide the evidence for improved service planning, better policy development, and research.
The Government recently released a framework document, which has provided an encouraging start for a regime that would not take effect before 2020. People with a My Health Record will be able to choose not to have their data used for secondary use purposes by selecting the ‘withdraw participation’ function in their My Health Record – we understand that this function will be available by the start of the opt-out period. The framework also flags that ‘dynamic consent’, the opting in or out of secondary uses on a case-by-case basis, is on the development timeline.
Secondary uses will not be allowed for ‘purely commercial’ purposes, nor will insurers have access to the information. The AIHW is charged with looking after secondary uses and will be developing the policies and structures needed in consultation with the public over the coming months and years.
For more information on how electronic health records can help population level health research, see this article, Using Electronic Health Records for Population Health Research: A Review of Methods and Applications.
Facebook was around for ten years before people twigged to issues around consent and privacy. Australia must be more proactive in safeguarding eHealth, as a future crisis could lead to diminished possibilities in terms of care received, and discourage people accessing it for fear of things being recorded they don’t want.
Perception becomes reality, and consumer fears about privacy and security could lead to people avoiding doctors and disclosing less when they do see them. This is especially important for any marginalised, stigmatised, or discriminated against group – such as many who are Aboriginal or Torres Strait Islander, mental health consumers, sex workers, drug users, or people living with HIV.
It is also important for the Federal Government be acutely mindful of how fickle community trust and confidence in a system such as My Health Record can be: trust can be slow to build, but quick to erode.
Communication about benefits and the assurance about safeguards have to go beyond what is required or even expected to ensure trust is not maintained, but built, as various consumer sentiment barometers tell us that trust in institutions generally is at a low ebb.
The consultative approach taken with the framework to guide the secondary use of My Health Record system data provides hope that this may be the case with My Health Record in general.
Health has lagged behind other sectors for too long when it comes to digital innovation. It’s time to accelerate and champion what digitally-enabled healthcare can do for the community.