Consumer-led Ideas for Better Primary Health Care – CHF Workshop

On the 19^th August, I had the pleasure of attending a workshop on the future of primary health care, organised by the Consumers’ Health Forum of Australia (CHF). The program for the day included an impressive line up of speakers, including the current Commonwealth Minister for Health, who demonstrated energy and commitment to reform.

Proceedings kicked off with presentations from the Chairs of the two connected large scale reviews currently underway: the review of the Medicare Benefits Schedule and the Primary Health Care review. It was encouraging to hear that the two reviews are not being conducted in isolation from one another, with crossover in membership designed to keep watch on changes in one area that may have significant consequences for the other. Both speakers emphasised that their tasks were not about savings, but about better “value” health care (focused on value for the system rather than the individual consumer). Both also commented on the importance of providing and measuring quality care through methods such as increasing use of clinical guidelines. Although there was a significant focus on people with chronic conditions and complex needs, how to deal with conflicting care guidelines for these people was not mentioned.

The focus on costs continued with the presentation from the private health insurance industry representative. The speaker described two programs focused on reducing costs associated with avoidable hospitalisations. The first targeted health fund members with chronic illness and repeated hospital presentations, providing integrated care wrapped around the consumer and GP. Services included phone support, care navigation and flexible funds to be used to improve health literacy and help ensure appropriate care. The second targeted consumers being discharged from hospital, providing three brief follow-ups to reconnect people with their primary health care providers. Both programs were described as having consumers at their heart and clearly have great potential to improve outcomes. It was therefore a bit disappointing to see the “outcomes” box on the evaluation slide describe the result as a reduction in claims rather than an improvement in health.

For me, the contrasting presentation was from the Australian Health and Hospitals Association speaker. She took the approach that incentivising health professionals to engage in what should be good business practice was not a good use of health funds. Reforms need to focus on the rising out-of-pocket costs for consumers as well as the system costs and focus on achieving outcomes rather than rewarding the business of carrying out health care. The business example was taken further with discussion of outdated IT practices hampering progress. This includes problems with data sharing and a lack of interoperability between proprietary health-related software packages.

The main theme of the day therefore turned out to be “how can we squeeze better value out of what we’re already doing?” Costs are an important part of health care but I am bothered when they are wrapped up as “person-centredness” as it can lead to selective care and ignores what matters for consumers. Rewarding outcomes sounds like a smarter move than activity-based incentives, but what happens to the consumers with very complex needs and/or multimorbidity who may not be able to achieve the outcome targets that get doctors the rewards? There is a risk that these consumers may face limited choice of health professionals willing to take them on.

The other theme that emerged was health literacy. I was interested in the conversation regarding health literacy as it seemed to be discussed as the way to ensure people could navigate the health system. Whilst it is true that improving health literacy can help consumers understand the most appropriate health care choices, this does not automatically equate to an ability to navigate the system or make the lowest cost choices. Factors such as complex conditions and location can also play a strong role in where consumers turn for health care. 

Michelle Banfield
Vice President, HCCA

"Aged Care: The People’s Forum" – at the National Press Club, 13 August 2013

Carol Bennet, CEO of CHF, at the Aged Care Forum.

Panel:

• Ian Yates – CEO, Council on the Ageing (COTA)
• Glenn Reiss – CEO, Alzheimer’s Australia
• Carol Bennett – CEO, Consumers Health Forum of Australia (CHF)

Ian Yates opened the forum by stating that over 40% of voters in the coming election will be over 50 years old. COTA wants to see a new deal for older Australians, which is outlined in their election platform. 

COTA is campaigning for:

• an end to ageism and age discrimination in all aspects of Australian society
• access to quality health services for all older Australians
• the participation of older Australians in the workforce as long as they want or need to
• access to quality aged care services when and where they are needed
• a reasonable standard of living for older Australians 

Yates went on to make the point that unemployment of Australians between the ages of 55 and 65 has the potential to have a detrimental impact on the health and wealth of this demographic. Whilst he welcomes the Government’s “Living longer, living better” initiative, aimed at reforming the aged care sector, Yates believes that it does not go far enough. The package will provide 80,000 new consumer-directed home care packages, in a similar format to the proposed Disability Care Australia packages. “Consumer-directed” means that the consumer controls the package and can leave different services if the care does not meet their needs.  The initiative will enable simpler access to residential aged care facilities (RACFs) and easier to understand financial arrangements to allow for comparisons between facilities. The new health reform package introduced by the Gillard Government will also see the provision of more beds in RACFs.

In summing up, Yates expressed his disappointment in the two federal leaders’ lack of attention to aged care during the recent debate.  He noted that there appeared to be little difference between policies of both parties. Yates emphasised that aged care funding needs to be provided on a needs-assessment basis rather than the current quota system, which is ineffective. He applauded the consumer-directed care elements of the “Living longer, living better” package, noting consumers want to make a contribution, be independent, and exercise personal choice. Yates also believes that the “My Aged Care” online gateway, which is part of the package aimed at simplifying information and access to aged care, needs a local face. He went on to state that the Productivity Commission report that informed the new reforms was comprehensive, but that significant portions of the report’s recommendations had not been included in the final package.  Yates asserted that there was strong support amongst the membership of COTA against the inclusion of the family home in the assessment of assets for an aged care place. Finally, he spoke on the need to have an open conversation about what constitutes a good death and respecting the choice of older Australians through the advanced care planning process. 

Glenn Reiss followed on from Ian Yates, commenting on the many exciting and daunting challenges facing the incoming Government with regard to dementia care. According to Reiss, the exciting part is the potential for driving social policy change, from the current model of a “one size fits all” approach to service provision, to a new model that promotes access to appropriate care and consumer empowerment. There are 320,000 people currently living with dementia in Australia, and by 2050, 900,000 Australians are predicted to be living with dementia. Dementia care costs the health system $5 billion annually and is the biggest risk factor in aged care. Reiss asserts the need for an increase funding for dementia research. To this end, Alzheimer’s Australia has launched its Fight Dementia campaign. While the Government has commenced implementation of an aged care reform package, Reiss believes that there will be a 5-10 year period before the impact of these reforms is fully felt.  

In summing up, Reiss called for:

• Access to care based on individual needs 
• An expansion of community care, particularly for those with higher needs, so that there is a real alternative to care in RACFs
• Dementia-specific respite care
• System advocates to help in guiding consumers through the complex system and ensuring informed choices
• Assured good quality in RACFs – at the moment its variable and not up to the standard that Australians would expect
• Zero tolerance of poor quality care in RACFs – quick remediation and investigation of adverse incidents
• Increased investment in dementia research
• Robust connection and communication between Disability Care Australia (DCA) and the aged care sector to ensure that people do not fall through the cracks at the DCA cut-off point of 65 years 
• Commitment from all political parties to these reforms

Carol Bennett started her address by noting how little about aged care had been mentioned during the election campaign thus far.  Carol warned that politicians will ignore the aged care debate at their peril.  She made the point that health is more than just treating illness – it is about occupational health, safety on roads, nutrition, transport, engagement in community life, family life, and all the other factors that make up a person’s life. Our system should promote health not just treat illness.  Bennett believes that our system is currently too hospital-centric, meaning that interventions are delivered the most expensive in environment, eating up limited health dollars.  A sizable proportion of hospital-based interventions should be dealt with in the primary health care context, within the community in a more appropriate setting and at a much lower cost. 

Bennett further commented that:

• Australia’s out of pocket health expenses are one of the highest amongst OECD countries, with costs for consumers higher than in the US and UK. 
• Poor dental health is an indicator of social disadvantage in our country, and that the burden of our current ineffective system impacts disproportionately on older Australians.
• Medication expenses are an issue for older Australians, due to the inflated costs for medications being passed on to consumers from the Government.
• Consumers don’t want to be passive recipients of services and that consumer-directed control of services and treatment is imperative.
• The current health system seeks to prevent mortality at all costs even against the best interests of patients.  Dying with dignity is not accessible for many older Australians. We need to have a conversation about futile care.
• Dementia care is particularly alarming at the moment with a system that focuses on acute episodes of care, rather than on quality of life.  Treatment is based on waiting for a crisis rather than on prevention or mitigation strategies.
• There is a critical need to move away from the current funding system that encourages episodic care rather than the holistic kind of care desired by consumers. Older Australians need to be at the centre of their care.

After the statements from each panellist, Yates, Reiss and Bennett participated in a Question and Answer session.  Below is a summary of that discussion. 

• All panellists agreed that improved aged care is not just about an increase in funding, but about a reimagining of the way in which care is delivered.  They all believe that community care needs to be emphasised so that the focus is not on institutional care. 
• Consumer stories are powerful for community organisations, as it puts a human face to an issue where figures and statistics cannot.  The Alzheimer’s Australia dementia campaign is based on consumer stories. 
• There is a growing trend toward older Australians wanting to have a voice and to contribute to the effectiveness of the health system.
• Advanced care planning needs to be coordinated nationally, across all states and territories to ensure a consistent approach. 
• There is a general acceptance that the new reforms introduce a “user pays” system where those who can afford to will pay more for their care.
• There is a little known “third class” in aged care which is comprised of older immigrants who have been sponsored by their families to come to Australia but don’t have access to any health services because of their visa determination.
• Economists and consumers agree that the current system is failing lots of people as there are not enough community care packages or RACF places where consumers want to go. There is a general belief that the new reform package will go some way toward improving some of these issues.
• There is a significant net capital and recurrent funding increase to RACFs as a result of the new reforms and there is a monitoring system to ensure this results in better care.
• There is a need to bring disability care, mental health, and aged care systems together to ensure people don’t fall through the gap and that services are delivered efficiently and effectively.

Kerry Snell

Health Infrastructure Program
Consumer Coordinator

Consumer Health Forum Workshops - Informed Consent & Quality Use of Medicines in Hospitals, March 2013

On the 25 and 26 of March, the Consumer Health Forum held two workshops; one on informed consent and the other on quality use of medicines in hospitals. Joanne Baumgartner, a HCCA member, attended on both days. Joanne completed this report to share with other consumers.

Workshop 1:  Informed Consent

This followed on from a previous workshop on Informed Financial Consent and discussion was focussed on the forms signed by consumers prior to their procedure or operation.

The general consensus was that patients/consumers need to be provided with substantially more information regarding

• The procedure itself;
• Who would conduct the procedure;
• The likely outcomes;
• Risks involved;
• Discharge and rehabilitation processes;
• Support options available, e.g. supported accommodation 

Consumers felt that these issues were not properly considered by health professionals and were rarely, if ever, discussed. In particular, rural consumers are often transferred to major city hospitals without their Informed Consent paperwork and are expected to simply accept whatever procedures were carried out at those hospitals. There was also no access to adequate post-discharge care in rural areas.

Treatment of mental health consumers was also an area of concern with regard to consent, as consumers felt that unnecessary force was being used too often with Involuntary Patients. This was considered to be an abuse of human rights. New procedures and protocols are required to ensure that all consumers are treated with dignity and respect.

Papers were presented by a range of health care professionals, including medical specialists and university researchers in the area as well as the Health Care Complaints Commissioner. These professionals agreed with consumers that more information needed to be provided to patients during the consent process. The suggestion was made that both consumers and clinicians could be required to check boxes indicating that sufficient information had been provided before signing off on a procedure.

Workshop 2: Quality Use of Medicines in Hospitals

This workshop specifically focussed on the lack of continuity of care and poor record keeping with regard to prescriptions in hospitals. The gaps between the emergency department and inpatient wards as well as poor communication on discharge were discussed. Consumers identified one of the main issues to be that many consumers, especially the elderly, did not have adequate knowledge or understanding of their medications to keep track of their own prescriptions.

A study has found that patients experienced fewer adverse effects from medications when they were able to keep them in a cabinet drawer by their bed and able to follow their medication regime on their own. However, consumers are rarely afforded this level of trust by clinicians with regard to administering their own medications.

Consumers also agreed that the use of generic medications is often confusing in hospitals, as it is hard for them to check whether they are being given the correct medicine and dosage. A hospital pharmacist explained to the group that hospitals were now using generic medications to save money, making it unlikely that consumers would receive the medications that they were used to at home. In this case, hospital staff need to ensure that consumers are told which medication is which to help them keep track of what they are taking.

Five ‘Rights’ for Quality Use of Medicines were identified as follows:

·         Right Patient

·         Right Drug

·         Right Dose

·         Right Route

·         Right Time

The workshop attendees agreed that all consumers have the right to receive information regarding their medications in an understandable format, rather than the many pages of unrelated information that is currently provided.

Joanne Baumgartner
HCCA Member and Consumer Representative 

CHF Members Forum

HCCA staff attended a CHF planning forum on 16 July 09 in Melbourne. Antonio Russo, Chair of CHF, opened the forum and outlined the purpose of the morning and then introduced the governing committee and CHF staff.

CHF is currently developing their Strategic Plan for 2009 - 2014 to be launched at their AGM. This forum was designed to draw ideas and priorities from the membership to inform the development of this Strategic Plan. Around 60 people from member organisations were in attendance.

The national health reform agenda will feature strongly in the development of the plan. CHF members expressed a desire for CHF to continue to provide a consumer voice in the reform agenda.

What follows is a summary of the session.

In recognition of the importance of the national reform agenda CHF invited the Hon Robert Knowles, Commissioner of the recently concluded National Health and Hospital Reform Commission (and Chair of Mental Health Council of Australia and former Victorian Minster for Health) to speak to the members about the work of the NHHRC.

The NHHRC was established by the Minister for Health (Nicola Roxon) in Feb 08 and has now completed their work and submitted final report to the Government. Their task was to take a helicopter view of health system to identify gaps and emerging trends and recommend changes to ensure the system could continue to meet the needs of the community and overcome the glaring inequities that are currently embedded. Their focus was very much on those who are dependent and need to access to the health system. IN their work they recognised that there is a need for formal consumer advocacy as well as the need to empower individual consumers to interact with the system and articulate their needs.

The tensions between tight timeframe and meaning participation were commented on. The Commission was established in February 08 and by April 08 they had prepared Beyond the Blame Game to feed into the Australian Health Care Agreements. This report outlined key principles to underpin a good health system and any changes that would be made. They then undertook a national tour of consultations with consumers and community people who use and depend on health system, staff at the front line and managers and policy people employed by government. They also commissioned reports from a range of experts. They submitted their interim report to reflect what they had heard from the community. In essence they found that Australia has a good comprehensive health system but there are gaps and inequalities in the system:

• oral health: 40% of Australians cannot access basic preventative and restorative oral health services mostly because of costs
• sub acute services are inadequate
• there is not consistent provision of primary health care across Australian
• provision of mental health services is patchy and in need of improvement
• rural and remote have difficulty in accessing basic services
• aboriginal health outcomes are appalling

The health system deals with people requiring acute episodes of care very well but does not necessarily deliver good care for those with complex and chronic conditions who require a continuum of care.

• There are significant changes occurring such as increased demand of services and this holds considerable implications for workforce
• tsunami of complex conditions and chronic have impact on health demands challenge for way services are structured and funded
  

The final report has been submitted to Government who are currently considering the report. It is anticipated that their final report will be made public after the Government has had the opportunity to consider their recommendations and prepare a broad response when it is released.
consistent with interim report

The next session was an opportunity for members to present their ideas on the direction and strategic priorities for CHF.

The issues raised by CHF members include:

• the need for education in the bureaucracy about how to engage with consumers
• need to define consumers and consumer representatives
• how do we define and shape family centred care? and the need to define a child?
• lack of education in the bureaucracy about how to engage with consumers
• convene regular forums for state peak consumer organisations
• patient centred health care - consumers need to be defining what this means and advocate for that,
• build in discussion and action about what climate change means for health
• shift towards consumer centred systems rather than a consumer representative on a committee
• consumer participation at local, state and national levels
• involvement of consumers in health and medical research

The forum was an excellent opportunity for HCCA to engage with other State based consumer organisations and staff connected with the Health Consumers Queensland, Health Consumer Alliance of South Australia, Health Consumer Council of Western Australia and the Health Issues Centre.

These organisations have recognised the need for us to further build our relationships and we will be looking for opportunities to discuss issues that we all face and learn from each other. This is an excellent way of building and sustaining the consumer movement.