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.
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.
Much of modern health care can be delivered more effectively when it is provided and coordinated in the community, at or near the patient’s home. This is what true patient-centred care is about.
We are in an age where consumers demand a responsive healthcare system, are vocal about the characteristics of the system they don’t want eroded and have expectations about the directions future healthcare should take.
One of their greatest calls is for care to be better coordinated, connected up and delivered by a cohesive team of clinicians. This team needs to comprise, at a minimum a GP, a nurse and a pharmacist with appropriate care and support from others as needed.
Modern technology and medicines make this possible, improving care of chronically ill people, reducing need for hospital care.
A challenge is to provide the right incentives for health practitioners, like doctors, nurses and pharmacists to coordinate and integrate their care and services in the best interests of the patient…and for patients to know how to access that care.
Making this patient-centred primary care happen depends to a large extent on government policy. We have seen forays designed to stimulate primary care advances including through Primary Health Networks and the Government’s own Health Care Homes Programme.
Already some commentators say these are languishing for lack of support and resources. For CHF, we believe PHNs continue to show much promise as health system improvers and Health Care Homes has the needle moving in the right direction.
Last week’s Federal Budget took us further along the incremental path to primary health care reform notably with an announcement for a Workforce Incentive Program that will enable general practices in all rural and remote locations to engage allied health providers, including non-dispensing pharmacists. This will be a benefit to real world care.
What needs to happen now is for the same, if not greater, level of reform of professional pharmacy services.
As longtime pharmacy leader, Professor Lloyd Sansom, said on his retirement from a career in which he played a national role in pharmacy and pharmaceutical policy and oversight, the future of pharmacy is in the primary care sector and the pharmacy profession needs to shift from its dispensing mentality to one of community care.
Professor Sansom is not alone in his views. The Smith 2013 ‘Now or Never’ review in the UK drew much the same conclusion saying that the traditional role of community pharmacy will be challenged and that disruptors such as automated technology to undertake dispensing and the use of online and e-prescribing will bear down on pharmacies and drive change.
The Pharmacy Guild’s own 2025 plan contemplates nine growth pathways for community pharmacy. This shift to community health hubs, online and in-home care futures are right up there.
Apart from the Budget, the latest episode in this process has been the fate of recommendations suggested by a Government-appointed review panel to open up pharmacies to greater competition and more dynamic primary care.
The Government’s response to the report by the Review of Pharmacy Remuneration and Regulation – known as the King Review – has been equivocal to major changes and to largely stick with the status quo. This has sparked much commentary with GP groups, lead researchers and CHF largely suggesting that it was a lost opportunity.
There is significant discussion still to be had about the future of pharmacy and its place in the primary health care system if consumer interests are to be served. A status quo approach to the professional services component of the Community Pharmacy Agreement is not the way to achieve this.
The inquiry, when established two and a half years ago also held out of prospect of the involvement of other stakeholders besides pharmacy owners in negotiating the Community Pharmacy Agreement which at a cost of $18.9 billion over five years finances the dispensing and other operations of pharmacies.
The review called for measures ranging from deregulating restrictions on new pharmacies, encouraging practice by pharmacists outside their traditional retail outlets and enabling consumer and professional pharmacists to be represented on negotiations for the pharmacy agreement.
The calls for consumer views on choice and access have largely been ignored. The Government response to broadening the participants in the Community Pharmacy Agreement did not commit to including other parties.
The review proposed payment arrangements that effectively would enable pharmacists to provide services through primary health outlets other than the pharmacy shopfronts. The Government only “noted” this proposal saying it could potentially “duplicate” existing Medicare-funded services.
But this is a missed opportunity to put community pharmacy into the primary health care team. If we are to achieve an integrated approach with people accessing care where it is appropriate and convenient for them then services need to be funded in a similar way.
The Government’s refusal to review in a systematic way the location rules which prevent competition among pharmacies is ignoring potential for improvement. The arrangement has been challenged by the review and by leading economic authorities.
A recommendation for the pharmacies, whose dispensing income relies largely on public money, to be required to offer a range of minimum services and to have accounting arrangements that enable appropriate evaluation, have been not been taken up by the Government.
And it was disappointing that the Government did not support the recommendations regulating the display of often unproven complementary “medicines”. This is an area where consumers are not given sufficient high-quality information and so often make ill-informed and costly choices when they could be spending funding on evidence based treatments and interventions.
The Government’s response locks in the current model of community pharmacy and refuses to even trial ideas designed to improve access such as machine dispensing: a reality in other countries.
A disturbing aspect of the Government’s reluctance to support evolutionary reforms to pharmacy is that such changes cannot be dismissed on cost grounds as they need not involve significantly increased government expenditure and should improve efficiencies and improvements for the community.
Where does that leave us? Sometimes reform is a slow burn. But as Professor Sansom has said “the future of pharmacy and its role in the health system has to evolve and its integration and acceptance of the medical model of health is what will give it the pathway to make a difference for the generations of pharmacists to come and for the community as a whole”.
Medicare is Australia’s universal health scheme. It is a Commonwealth government program that guarantees all citizens (and some overseas visitors) have access to a wide range of health services at little or no cost. The government has established a Medicare Review Taskforce to review all of the Medicare items to ensure they are aligned with contemporary clinical evidence and practice and improve health outcomes for patients. Within the Taskforce’s brief there is considerable scope to review and advise on all aspects which would contribute to a modern, transparent and responsive system. This includes not only making recommendations about new items or services being added to the MBS, but also about a MBS structure that could better accommodate changing health service models.
The below Clinical Committees and Working Groups have been established to undertake the detailed review of MBS items. In some cases, the Taskforce has nominated consumer representatives to some of the Clinical Committees/Working Groups listed below. Two consumer representatives will be appointed on each of committees and working groups, newly nominated consumer representatives can expect a level of mentorship and advice from those consumer representatives who are already involved with the Medicare Benefits Schedule Review Taskforce Clinical Committees and Working Groups.
General Practice and Primary Care (Phase 3) Clinical Committee
Nurse Practitioner & Participating Midwife Working Group
Allied health Working Group
Mental Health Working Group
Aboriginal and Torres Strait Islander Health Working Group
Psychiatry Clinical Committee
Pain Management Clinical Committee
Colorectal Surgery Clinical Committee
General Surgery Clinical Committee
Ophthalmology Clinical Committee
Optometry Clinical Committee
Oral & Maxillofacial Surgery Clinical Committee
Paediatric Surgery Clinical Committee
Plastic & Reconstructive Surgery Clinical Committee
Thoracic Surgery Clinical Committee
Vascular Surgery Clinical Committee
Consumer representatives support the Clinical Committees and Working Groups in achieving the MBS Review goals by:
Participating in committee meetings and deliberations to identify where changes are required to MBS items.
Providing consumer perspectives and engaging in the committee’s decision-making with emphasis on five key areas:
Safety – current use levels, appropriate use, contemporary and safe practice equipment.
Quality- high quality care, safe levels of practice, clinical guidelines and evidence.
Access – appropriate use and access to items and access considering geographical location (e.g. rural and remote communities).
Effectiveness - benefit for patient group.
Cost Effectiveness value for money/out of pocket cost.
Assisting in pointing out where item descriptors can be written in a way that is understandable to patients yet still reflects the technicalities of the procedure undertaken.
Challenging the clinicians about what is accepted practice yet may not seem appropriate to health consumers.
Providing input into the Clinical Committee/Working Groups reports ensuring they are in plain English and reflect the consumers’ perspectives on the services funded under the MBS. These views are included in final reports to the MBS Review Taskforce and recommendations to the Health Minister.
Evaluating MBS items in the scope of the Clinical Committee, including the findings from working groups and articulating consumer perspectives via the Clinical Committee to the Taskforce.
The expected time commitment is twelve weeks. The workload will consist of six face to face and teleconference meetings. The first meeting is anticipated to take place in late May/early June 2018. As this work is short term, we ask that consumer representatives only apply if they are able to commit to every meeting within the twelve week period. Please note that sitting fees and travel costs will be covered for this work.
In order to bring a fresh consumer perspective to this work, the Department of Health requests applications from consumer representatives who have NOT previously applied to MBS Clinical Committees either via CHF or directly with the MBS Review team at the Department of Health. Technical expertise is not required, but experience as a consumer representative and familiarity with the subject area from a consumer perspective are strongly desired. Consumer representatives bring an essential community perspective to committee deliberations, and do so in accordance with the evidence regarding the imperative for co-design in health policy and research.
Please note that the Department of Health has asked CHF to provide a shortlist of three consumer representatives for each of the Clinical Committees/Working Groups for the MBS Review Taskforce’s consideration.
2. Attach a letter of endorsement from a supporting health consumer organisation and/or provide sound demonstration of your links with a consumer base. This letter ensures that consumer representatives are accountable to consumers. Please note that the health consumer group need not be a CHF member. This process ensures consumer representatives are placed with the confidence of consumers, and have in place a consultative base enabling reps to draw from and report to consumers.
3. Attach a short CV in pdf format which CHF will in turn forward on to the Department of Health
Please contact Ghislaine Martin on 02 6273 5444 or via email at firstname.lastname@example.org should you have any queries.
Expressions of interest close at midnight AEST Sunday 6 May 2018
This blog was originally published on John Menadue's, 'Pearls and Irritations' here
While in the real world consumers struggle to meet private health care costs, health funds are hoping for yet more government help.
A mix of Government subsidies and regulatory protection appear to have sheltered health funds from market realities, not least the feedback from exasperated members who are reporting with increasing vehemence their concerns about the poor value their health insurance provides.
How else do you explain the suggestion from the industry that an even bigger tax is required to prod higher income earners into taking out insurance?
Granted, there are a number of funds who are not-for-profit and provide insurance to sections of the community or various professions such as teachers and the defence community. But on the whole, this is an industry which has profited from high annual premium increases for the past 20 years and even when, as now seems likely, this year’s rise will be around twice the inflation rate, a rise possibly below 4 per cent is being hailed as good news.
The growing frustration of fund members fuelled by premium pressures and shrinking benefits brings into question the speed at which the industry has responded to the signals from its market. Any other marketer of a premium product would be acting with agility, haste and urgency to ensure its product remains relevant and valued. But then health insurance is not like any other market.
This state of affairs is impacting in the real world – and impacting hard the many families and older Australians who go to great lengths to retain their insurance. Many Australians are walking away from insurance. The prospect of having to pay even more in out of pocket costs on top of hefty $4,000 plus annual premiums has been the last straw. After steady growth in fund memberships earlier this century, the proportion of Australians with health insurance has dipped to 45.8 per cent, its lowest point in six years.
The speculation about this year’s premium increase comes amid ballooning evidence of the continued growth in out of pocket costs. The Consumers Health Forum has launched a national Out of Pocket Pain survey (see Out of Pocket Pain survey) to capture the lived experiences of consumers who learn that there is an additional level of discomfort quite apart from the physical pain of a medical procedure.
We propose to use the results of the OOP survey to inform the positions we take to the newly established Ministerial Advisory Committee on Out of Pocket Costs. We are the only body representing consumers on the otherwise medically-dominated committee.
As we near the 20-year mark since the array of subsidies and regulatory provisions were provided to a then-ailing health insurance sector, it needs to be asked whether the tax sticks for consumers and carrots for the health funds have worked to the community’s benefit.
We have been left with a set of arrangements that was meant to reduce pressure on the public hospitals but which now sees increasing numbers of privately insured patients seeking public hospital care— so much so that the Minister is now pondering penalties on the public system at the bidding of an already highly profitable private system.
Is it not time for the funds to take some lead in boosting the value of their products so they ‘compete’ on merit, rather than looking for more subsidies to improve affordability of their products?
Cost is only one part of the value equation. Seeking a higher tax stick to coax more joiners might be an easier short-term route, but as history is showing, it is not sustainable. Either the private sector needs to significantly boost value and do something about rising medical costs, particularly specialist fees, and/or review the whole PHI suite of policy settings.
CHF has argued the latter course for some time, urging the Government to implement a Productivity Commission inquiry into government assistance to health funds.
And there are numerous areas where a more effective and unified approach by the private sector is in order. For instance, one area where immediate better value could be realised is in rehabilitation services where, presently, insured patients post-treatment must attend hospital-based services for required periods to qualify for benefits.
One option would be to follow the principles of the recent disability and aged care reforms of the ‘dollar following the consumer’ whereby people could have a payment by the insurer to which they direct to a package of tailored rehab services of their choosing. Food for thought.
We are witnessing an erosion of equity of access to healthcare not merely because of high costs but also because of a failure to take much needed system-wide reforms that reflect the real potential of modern health care that need not rely so heavily on hospital-based services.