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Consumer-Centred Health Care
NATIONAL CAMPAIGN
RECLAIMING OUR HEALTH SYSTEM
The health policy and health reform debate in Australia is
thoroughly dominated by provider and practitioner peak bodies in
both private and public sectors. Politicians take their policy
cues from these peak bodies. Consumer voices are
poorly-developed, under-resourced, and almost entirely ignored
in public debate.
There is no national health consumer body in Australia that has
a strategic commitment to consumer-centred health care.
Illness-specific and institution-specific consumer
representation and advisory bodies have emerged in the last
thirty years but are usually restricted in their role to the
facilitation of consumer voice within provider and
practitioner-centred systems.
The National Campaign for
Consumer-Centred Health Care
is a response to this imbalance in the Australian health
reform debate. It aims to generate a broad movement for
transformational change in health policy towards
consumer-centred health care.
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to become involved.
On 20th January 2010, the West Belconnen Health
Co-op opened its doors in a Canberra suburb as a health service owned by consumers and
community organisations, with a philosophy of integrated, holistic
person-centred care.
A century ago, most of Australia's health
organisations were consumer-initiated, consumer-centred and consumer-managed. Most general practitioners were contracted to collectives of consumers
(friendly societies) for primary care services on a capitation basis (payment by
person rather than episode of care). Bush nursing associations ran small
hospitals and clinics on a capitation basis (payment by subscription). Hundreds
of pharmacies were run as community services by friendly society dispensaries.
Charities and membership-based organisations ran most of our larger hospitals.
A century later, politicians, bureaucrats and
provider peak bodies act as if health care belongs to politicians, bureaucrats
and provider peak bodies. It doesn't. It belongs to consumers, citizens and
taxpayers.
Our Aims
The aims of the Campaign are:
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To develop a movement of citizens and consumers for change
in the Australian health system towards consumer-centred
health care.
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To participate in the health reform debate in Australia and
influence its direction; and
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To influence the thinking of politicians, policy makers,
journalists, practitioners and consumers about health care and health
reform.
Our
Principles
Our
four principles are:
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My Life. My History
Information about a person’s health history and care
strategies belongs to that person, and authority in
management of and access to this information resides with
each person.
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My Life. My Care
A person requiring health care interventions should be
resourced with the means to acquire independent personalised
information and support in making decisions about care
options and coordination.
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Self-Care and Self-Management
A person with chronic or complex health conditions has a
right to expect support from providers and practitioners in
developing their capacity for self-care and self-management
in their journey towards better health.
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My Life. My Money
A person requiring health care interventions has a right to
know the price,
quality and safety credentials of these interventions.
Our
5
Point Campaign
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A Person-Controlled Electronic
Health Record
The Final Report of the National Health and Hospital Reform Commission in
June 2009 recommended that by 2012 every Australian consumer should have an
electronic health record which will be used by providers and practitioners
across service and disciplinary boundaries. Each person should be able to
authorise access to the record to the providers and practitioners of their
choice.
This has yet to happen. In May 2010, the Rudd Government committed itself to introduce this system
from 2012 on an opt-in basis for those consumers who wanted it. A vast
amount of public money was wasted in trying to implement this Record with
little consumer input into the process. With a lack of strategic
vision for effecting change in health systems, the Commonwealth's version of
a Patient-Controlled Electronic Health Record died a sorry death.
In
2015, the Turnbull Government has re-instated a commitment to introduce a
Patient-Controlled Electronic Health Record, this time on an opt-out basis,
rebranding it as My Health Record. Two trials will be undertaken in
2016 involving one million consumers in Far North Queensland and the NSW
Nepean Blue Mountains region.
We believe a PCEHR is best developed as an
initiative of collaborating associations of consumers and health care
organisations with government support. It must be independent of provider
and practitioner control, and designed to enable consumer self-care and
self-management, and consumer-generated innovation
The critical step to a
consumer-centred health system is the development of a consumer-controlled
electronic health record by collaborating associations of consumers and
health care organisations.
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A Care Coordination and Brokerage
Package for Every Consumer with a Diagnosed Chronic and Mental Illness
Every consumer
with a diagnosed chronic and mental illness
should receive a Care Coordination and Brokerage Package. We
propose that this Package should comprise an
initial amount of $2000 would be
followed by an annual $1000 payment
thereafter.
 This
Package would be
for the purpose of
purchasing the services of a care
coordinator/ care broker /health coach as
required by the consumer to guide them
through the maze of services, costs, waiting lists and information
overload. Payments may be
made for coordination,
advocacy, health literacy training, self-management
training, individual or
collective purchasing and tendering,
contractual arrangements, and personal
health and fitness coaching.
An eligible
consumer would nominate
a Care Coordinator and Broker to receive and then manage the
Package on their behalf. The Care
Coordinator and Broker may
be a community health organization, an
illness-specific association, a health fund,
a GP or nurse or allied health practitioner,
or a consumer organisation. It would be the
consumer's prerogative to choose a Care
Coordinator and Broker who has the capacity to manage the financial
allocation, enter contractual arrangements
on their behalf,
and manage their support and care
relationships to their satisfaction.
A consumer must be free to
select their Care Coordinator and Broker, and free to
transfer from one to another annually.
Every consumer with a chronic or mental
illness should be resourced to find a
pathway through the complexity and
fragmentation of the health system. A system
that does not resource and empower consumers
to do this in a personalised way effectively
denies access.
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Funding for Regional Pools of Consumers with Chronic
and Mental Illnesses to Purchase Localised and Personalised Care
Fee-for-service models of health funding are suited to acute and episodic
care. They are not suited to funding care for consumers with chronic and
mental illnesses. Fee-for-service systems provide no incentive for
practitioners and providers to develop the self-care and self-management
capacity of consumers. On the contrary, they incentivise multiple,
disconnected interventions and drive over-servicing.
 The
Commonwealth should redirect Medicare funding for single episodes of care
for chronic and mental illnesses, to regional pools of consumers with these
conditions who opt to collectively purchase localised and personalised care
through a Regional Pool of Consumers. Where consumers in any of the 31
Primary Health Network regions establish a pool of consumers, with
consumer-based governance, we propose that this enrolment pool of consumers
be recognised and funded by the Commonwealth, on an opt-in basis, to
purchase localised and personalised care. State governments should redirect
funding similarly.
We also propose that an independent third party to commissioned to monitor
expenditure by regional pools of consumers, and measure movements in
productivity in each enrolment pool.
Over time, we propose that additional funding and management functions be
transferred from providers and practitioners to these enrolment pools of
consumers.
Where consumers in any of the 31 Primary Health Network regions
establish a pool of enrolled consumers to purchase localised and
personalised care in chronic and mental illness, these regional pools of
consumers should be recognised and funded by governments.
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A Health Care
Price and Safety Information Service
The Commonwealth
and State Governments should establish an
independent
Health Care Price and Safety
Information Service
to
make available to consumers comparative price and service
quality data on hospitals, providers and
practitioners so that consumers can know
what they are using and purchasing.
This
entity would be a statutory authority,
independent of providers and
practitioners, with authority
to require information from providers,
insurers
and practitioners for public disclosure
online, including:
- Hospital payments for the services of medical specialists
- Health fund payments for medical specialist charges
- Hospital errors and deaths
- Hospital-based infection
rates
- Specialist fees in private practice
In a consumer-centred
health system, consumers and their Care Coordinators and Brokers, must be
able to access information about the price and quality of the services they
use and purchase.
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Consumer-Elected Consumer Participation in Health
Service Governance
Public and community health services and networks should enable one third of
their governing board positions to be filled by consumers elected by
registered users of these services.
Our preferred composition for governing boards of public and community
health services is one third funders (government), one third
practitioners/providers, and one third consumers.
It is a very simple exercise for complex organizations
to establish a system of opt-in registered users of their service and allow
a periodic election in which these registered users vote.
One third of governing board positions in
public and community health services and networks should be filled by
consumers elected by registered users of these services, as a condition of
eligibility for public funding.
Local Incubators of Innovation
Successive Commonwealth governments established and funded Divisions of General Practice,
later renamed Medicare Locals, and subsequently renamed
Primary Health Networks, in regions areas across Australia to strengthen the
place of general practitioners in the health system.
The Commonwealth
could have established and funded Divisions of Consumers
to facilitate, incubate and resource consumer-centred innovations in health
care. It didn't.
The Commonwealth has given the 31current Primary Health
Networks (PHNs) a brief to integrate primary health care and facilitate a more streamlined
patient journey through the health system. This was the role Divisions had
too.
PHNs are by governed by health providers and
practitioners, with nominal consumer input.
Despite their provider and practitioner-centred governance, some
PHNs are amenable to
supporting innovations to the
consumer pathway through the health system. We plan to work with these
bodies to incubate local innovations in health care.
A map of the 31 PHNs and their boundaries is available
here.
Local bodies are needed to facilitate, incubate and resource
consumer-based innovations in health care on a local and
regional basis.
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The ideas in this Campaign were
generated at the
Consumer-Centred Health Care: Policy Innovation and Empowerment
conference held in Melbourne in March 2010.
The 4 points in our Campaign are not the last
word in health reform. They are simply starting points for the
re-direction of reform efforts away from a narrow pre-occupation
with hospitals to a focus on the total consumer experience of
health and health care. As starting points in this process, our
Campaign has a focus on the funding and structuring of consumer decision-making, empowerment, self-care
and self-management.
Our aim is to influence governments to implement this
4 point agenda. To this
end, we will work to gather political support for the agenda from politicians,
political parties, policy makers, and the community.
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