Introducing the National Campaign for Consumer-Centred Health Care

The information below has been provided by a new group, the National Campaign for Consumer-Centred Health Care.

It gives some background on the campaign’s aims, principles, membership and plans.

It also includes a call for people interested in working with Medicare Locals on behalf of consumers.

If you’ve any questions or comments for the new group, please post them below. Vern Hughes, the convenor, has agreed to write for Croakey addressing any issues raised.

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Background to the formation of the National Campaign for Consumer-Centred Health Care

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.

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.

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To develop a movement of citizens and consumers for change in the Australian health system towards consumer-centred health care.

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 reform.

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The Campaign’s four principles are:

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.

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.

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Members of the Steering Group are:

Professor Debbie Kralik, Royal District Nursing Service SA

Samantha Thomas, Consumer Health Research Group, Monash University

John Stubbs, Cancer Voices Australia NSW

Maxine Drake, Health Consumers Council WA

Professor Enrico Coiera, Centre for Health Informatics, Australian Institute of Health Innovation UNSW

Dr Ronald Hicks, Newcastle NSW

Colin Frick, Improvement Foundation Australia, SA

Jose Simsa, Community Participation Committee Inner South Community Health Service VIC

Yvonne Orley, Self-Care Advocate QLD

Professor Kerry Bennett, Diabetes and Diversity in Western Melbourne,

Australian Community Centre for Diabetes VIC

Jacqui Gibson, Prahran Mission VIC

Debra Carnes, Consumer Advocate TAS

Geoff Barry, Sydney South West Area Health Service Consumer Community Council, NSW

Sharon Lawn, Chronic Condition Management and Self-Management, Flinders University SA

Geoff Isaac, Consumer Advocate QLD

Professor Craig Veitch, Community Based Health Care Research Unit, University of Sydney NSW

Kim Smith, Mental health Consumer Advocate, Clubhouse SA

Jacqui Crowe, Family/Carer Consultant, Ballarat Health Service Psychiatric Service, VIC

Vern Hughes, Social Enterprise Partnerships VIC (Convenor

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Four point plan

The ideas in this Campaign were generated at the
 Consumer-Centred Health Care: Policy Innovation and Empowerment conference held in Melbourne on 22-23 March 2010.

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 and self-management.

1. A Person-Controlled Electronic Health Record



The Commonwealth Government has made a commitment to introduce a person-controlled electronic health record for Australian consumers 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.
The Commonwealth has undertaken to introduce this system from 2012 on an opt-in basis for those consumers who want it.
It has also said that consumers should be able to upload their own personal health history for incorporation into this system. However, this Commonwealth commitment is not strong. In the face of pressure from hospitals and other practitioners, the Commonwealth may introduce a watered-down version of the record without consumer-contributed content being accepted and without consumer-control over access. 

Strong political pressure is needed to get the Commonwealth to honour its commitment to introduce a person-controlled record. Additional pressure is needed to get the Commonwealth to make it mandatory for aged care, disability and mental health providers to use the record.

The first step to a consumer-centred health system is the introduction of consumer-controlled electronic health record by 2012.

2. A Care Coordination and Brokerage Payment for every consumer with a diagnosed chronic and mental illness
Every consumer with a diagnosed chronic and mental illness should receive an allocation of resources in the form of a Care Coordination and Brokerage Package. This Package can be introduced immediately within stand-alone services, without further public policy change, where services aggregate existing funding streams and make them available to consumers in person-centred formats. At the policy level, Packages of this kind can also be introduced by state and commonwealth initiative.

This Package of resources would be for the purpose of engaging and purchasing the services of a care coordinator/care broker/health coach as required by each 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, or they may self-manage.

A 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 Package, enter contractual arrangements on their behalf, and manage their support and care relationships to their satisfaction.

An eligible consumer would nominate a Care Coordinator and Broker to receive and the manage the Payment 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.

3. A Person-Controlled Health Management Tool


Every consumer with a diagnosed chronic and mental illness, disability and aged frailty, should receive a payment for, and a legislated entitlement to, a person-controlled health management tool.

Every eligible consumer would receive an initial set-up payment of $2,000 for acquisition of a person-controlled health management tool, and training in its use. Thereafter, an annual payment of $500 would be received for maintenance and training, paid to their Care Coordinator and Broker or nominated agent.

 All providers and practitioners supplying services to eligible consumers with chronic and mental illnesses, disabilities and aged frailty, would be required by legislation to enter information on the service supplied into the person-controlled health management tool. The tool would enable the consumer, or their family or Care Coordinator and Broker, to coordinate information and support tools in accordance with their care plan.
 New technologies make it feasible and affordable for consumers, and their agents, to manage their health care through a person-controlled management tool. Commonwealth legislation will be required to make it mandatory for providers and practitioners to use this tool in partnership with the consumers who seek their services.

4. A Health Care Price and Safety Information Service



The Commonwealth 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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How to become involved 

There are many ways you may become involved.

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 Medicare Local

Participate in developing reform innovations in your area

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Seeking consumer input to Medicare Locals

Expressions of interest are invited from people wishing to participate in reform innovations in each of the 62 Medicare Locals in the following roles:

Coordinator

The role of a Coordinator in each Medicare Local is to monitor innovative developments locally and act as a contact person for consumers and support organisations who want to develop innovative projects. The Coordinator will administer a social media networking site for consumers, carers, and support organisations in their Medicare Local.

Consumers

Consumers, carers and support organisations are invited to register their interest in participating in their Medicare Local. Where there are, say, 10 or more consumers in each Medicare Local 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 move on it as a team, in a localised way.

Team Leader

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 Medicare Locals about their work in these areas.

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, to be made available through the Medicare Local structure with $383 million allocated to it. Our Campaign will 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 our Campaign will develop self-direction and support options and appropriate self-management tools.