RECLAIMING OUR HEALTH SYSTEM
Consumers and Carers in
Primary Health Networks
The Commonwealth Government has created 31
primary health organisations called Primary Health
Networks to steer reform in primary health care.
PHNs replace the Divisions of
General Practice and Medicare Locals as failed mechanisms for
integrating care and streamlining consumer journeys through the health care
PHNs to work where their predecessors failed, consumers, carers and support organisations
will need to get organised in each PHN region to develop and incubate innovative projects and
alternative funding models. PHNs can progress these initiatives and
support them, in areas such as chronic illness, mental illness, aged care, e-health and home-based
management of complex care.
Consumers and carers in each of the 31 Primary Health Network regions
can establish pools of enrolled consumers to purchase localised and
personalised care in chronic and mental illness. We want to trial
alternatives to fee-for-service through these consumer and carer-governed
purchasing pools. It's time for consumers and carers to get organised.
The National Campaign for Consumer-Centred Health Care
aims to enable PHNs to succeed in enabling reform. The Campaign will gather ideas and innovations from consumers, carers and
support organisations through Co-odinators in each PHN region, and Team Leaders
in areas such as chronic illness, mental illness, aged
care, e-health and home-based management of complex care.
The Primary Health Networks are:
Central and Eastern Sydney
Nepean Blue Mountains
South Western Sydney
South Eastern NSW
Hunter, New England, Central Coast
North Coast NSW
Darling Downs West Moreton
Central Qld, Wide Bay, Sunshine Coast
North Western Melbourne
South Eastern Melbourne
Maps of the areas
covered by each of the 31 PHNs are available
Call for Participants
Expressions of interest are invited from people wishing to participate in reform
and innovation in each of the 31 PHN regions in the following roles:
The role of a Coordinator in each
is to monitor innovative developments locally and act as a contact person
for consumers, carers and support organisations who want to develop innovations. The Coordinator will administer a social media networking site
for consumers, carers, and support organisations in their PHN.
Consumers, carers and support organisations are invited to register their
interest in participating in their PHN region.
Where there are, say, 10 or more consumers in each region
who want to participate in a new way of doing things in mental health, or
chronic illness self-management, for instance, they will connect up via their
Coordinator and take initiaties as a team, in their region.
The role of Team Leaders is to lead the development of strategies for innovation
in areas of mental health, chronic illness, aged care, e-health, self-managed
packages of care, home-based management of complex care, and health care
management tools. Team Leaders will liaise with Coordinators in PHNs about their work in these areas.
to express an interest in any of these roles.
An example of
the work we have in mind:
The Commonwealth Strategy on Mental Health includes 'flexible care packages' for
24,000 people with a severe mental illness, attached to a Care Facilitator for
each person, $383 million allocated to it. We would like to develop a process where
we support people who are eligible for these packages to take them up in an
innovative way, based on consumer self-direction and mutual support.
Self-direction can be done in a variety of ways, and we will develop
self-direction and support options and appropriate self-management tools.
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.
The National Campaign for Consumer-Centred Health Care
is a response to this imbalance in the Australian health
system and health reform process. It aims to generate a broad movement for
transformational change in health policy towards
consumer-centred health care.
Commonwealth Health Minister Susan Ley has
placed consumer-centred health care as a priority for the Turnbull Government.
speech in October 2015
to the Canberra Press Club signals a hopeful change of direction. The
speech is about
placing the consumer at the centre of the health system, finding alternatives to
fee-for-service in chronic and mental illness, re-instating a person-controlled
electronic health record with an opt-out rather than opt-in process, and
emphasising innovation in preventing illness and over-servicing.
The aims of the Campaign are:
To develop a movement of citizens and consumers for change
in the Australian health system towards consumer-centred
To participate in the health reform debate in Australia and
influence its direction; and
To influence the thinking of politicians, policy makers,
journalists, practitioners and consumers about health care and health
four principles are:
My Life. My History
Information about a personís health history and care
strategies belongs to that person, and authority in
management of and access to this information resides with
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.
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.
My Life. My Money
A person requiring health care interventions has a right to
know the price,
quality and safety credentials of these interventions.
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
A century ago, most of Australia's health
were consumer-initiated, consumer-centred and
consumer-managed. Most general practitioners were
contracted to collectives of consumers
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
were run as community services by friendly society
Charities and membership-based
organisations ran most of our larger hospitals.
A century later, politicians, bureaucrats and
bodies act as if health care belongs to politicians,
and provider peak bodies. It doesn't. It belongs
A Person-Controlled Electronic
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
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.
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.
A Care Coordination and Brokerage
Payment for Every Consumer with a Diagnosed Chronic and Mental Illness
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
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.
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
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.
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
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
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.
A Health Care
Price and Safety Information Service
should establish an
Health Care Price and Safety
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.
entity would be a statutory authority,
independent of providers and
practitioners, with authority
to require information from providers,
and practitioners for public disclosure
- 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.
Consumer-Elected Consumer Participation in Health
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.
TO BECOME INVOLVED
There are many ways you may become involved in our National Campaign for
Consumer-Centred Health Care.
- Join up (there is no cost)
- Invite a speaker from the
Campaign to visit your group or organisation
- Express your interest in
acting as a Coordinator in your PHN
in developing care innovations in your area
to become involved in any of
The ideas in this Campaign were
initially generated at the
Consumer-Centred Health Care: Policy Innovation and Empowerment
conference in Melbourne on 22-23 March 2010, and in subsequent
These 4 points 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