24 February 2017 Submission

Submission to the draft Australian code for the responsible conduct of research

Consumers Health Forum

The Consumers Health Forum of Australia (CHF) is the national peak body representing the interests of Australian healthcare consumers and those with an interest in health consumer affairs. CHF works to achieve safe, quality, timely and affordable healthcare for all Australians, supported by accessible health information and systems. We welcome the opportunity to provide feedback on the revised draft of the Australian Code for the Responsible Conduct of Research as part of our ongoing relationship with the National Health and Medical Research Council (NHMRC).

Issues

CHF is concerned about the lack of direct reference to consumers being involved in research.

CHF and NHMRC partnered in 2002 and 2016 to develop the joint Statement on Consumer and Community Involvement in Health and Medical Research. The vision of the statement is:

Consumers, community members, researchers and research organisations working in partnerships, to improve the health and well-being of all Australians through health and medical research.

As stated in the foreword of the joint statement, the importance of consumer and community involvement in research has become widely recognised. The NHMRC has embraced the 2002 statement through the requirement of applicants to the Centres of Research Excellence scheme to demonstrate extensive involvement by research end-users and the community, and the Partnerships for Better Health initiative. Both organisations are committed to the vision expressed in the statement and will work together to promote its implementation across the sector.

Page 2 of the statement explicitly mentions the 2007 version of the Australian Code for the Responsible Conduct of Research. The code is quoted:

Appropriate consumer involvement in research should be encouraged and facilitated by research institutions and researchers.

This statement does not appear in the current draft of the Code. The closest mention is principle P5, which states:

Respect for research participants, the wider community, animals and the environment.

This limits community involvement to research participants and ignores the broader role of consumers in the planning and design of research and as part of the research team. We view this as a significant watering down of the role of consumers in research.

No explicit mention of end users, consumers, the community or any other related group are mentioned in the responsibilities listed. We feel that these omissions are significant.

The 2016 statement was released in September 2016, just prior to the release of the consultation draft of the code. We recognise that these overlapping time frames may have precluded the integration of the two documents. However, we feel that this omission is a significant one which needs to be addressed before the new code is finalised.

We suggest that a new principle is developed either using the wording directly from the previous version of the code or similar wording.

We would be happy to collaborate with the NHRMC to develop appropriate wording.

31 January 2017 Submission

Submission to the Digital Health Agency Discussion Paper

Consumers Health Forum

This is a brief initial submission in response to the discussion paper released by the Agency in November 2016. We look forward to working with the Agency to involve consumers more and to progress and resolve the issues raised in this submission and by other consumers through the consultation process, such as through the focus groups we partnered with you to deliver in late January 2017.

We support the development of a digital health strategy for the entire health sector, one which is led by consumers but is executed by the entire health system. A comprehensive digital health strategy should provide a set of tools for consumers, clinicians and health service providers to work in partnership to have consumer –centred care. Central to this is empowering consumers to have more options for taking more responsibility for their own health.

The overall objective for the national digital health strategy should be framed simply and strategically, for example, “connected care, connected system”. A successful, forward-looking strategy needs to include several components including information, data and knowledge management; a prevention and patient self-management focus; measures and infrastructure to promote a better connected system and experience of care such as shared electronic records and secure messaging; and support for innovations in the delivery of clinical care and increasingly personalised medicine. In particular the strategy should prioritise:

  • the roll out of a fully functioning comprehensive electronic health record with robust privacy controls .
  • creating an environment for the development of and implementation of accredited on- line self-management tools and apps for smart phones and other smart devices across a range of conditions and needs;
  • more widespread use of telehealth and telemedicine and related to this tools for remote monitoring for carers ; and
  • training and education for consumers and health professional in how to use the tools and incentives put in place to encourage their adoption.

The strategy needs to address all these issues in a co-ordinated way. Whilst the electronic health record, My Health Record, is often seen as the most important part of the strategy, and for some consumers digital health is simply the record, there is no reason why the other parts of the strategy could not be pursued concurrently.

20 December 2016 Consumers Shaping Health
Consumers Health Forum

2016 draws to a close after a productive year for CHF and the wider healthcare consumer sector.

20 December 2016 Submission

Submission to the Federal Treasurer for Federal Budget 2017-18

Consumers Health Forum

Consumer focused commitments for a 21st century consumer centred healthcare system

Adequate and equitable resourcing of our health system is essential to allow access to healthcare when and where consumers need it. Evidence-based and well-resourced health systems improve national productivity, are more cost-effective and equitable. Over time, moving to models of care which promote services being integrated will benefit consumers. Integrated care which puts the needs of people and communities, not diseases, at the centre of health systems and empowers consumers to take charge of their own health facilitates the adequate and equitable use of resources. This can be achieved through involving consumers in design as they can accelerate improvement and spur practical and local health and social care solutions. Examples of how this can be done already exist such as the work to produce the National Medicines Policy which recognises the fundamental role consumers have in reaching the objectives of quality care, better value for taxpayers and universal access to basic health services.

As the peak national body for consumer’s involvement in health CHF supports the development of an efficient, inclusive and accessible health system. We call on the Federal Government to take action in two key ways: to develop a national vision for our health system and to adequately resource it.

15 December 2016 Submission

Accreditation Requirements and Processes for Emergency Medicine Training Providers

Consumers Health Forum

CHF believes that consumers and leaders of health service organisations should work together to create a health system that is responsive to patient, consumer and carer preferences and needs. Equally, consumers and clinicians should work together to plan, develop and evaluate services. Evidence is building about the links between effective partnerships, good consumer experience and high quality health care.

For example:

  • At the treatment level the existence of effective partnerships is associated with improved clinical outcomes, delivery of preventive care services and adherence to treatment regimens.
  • At the system level there is evidence that delivering health care that is based on partnerships can result in reduced hospital costs, lower cost per case and reduced length of stay.

With this evidence in mind, CHF provides the following comments about the proposed accreditation requirements and processes for emergency medicine specialist training providers.

12 December 2016 Submission

Submission to the 5th National Mental Health Plan

CHF supports the development of patient centred, holistic care. An element of this is the dismantling of the silos that currently exist between mental and physical health. These silos are evident at the point of care delivery but also at the system and policy setting level. We are strong advocates of the need to take a whole-of-person approach to care planning, coordination and delivery of services and to better bridge mainstream health care and specialised mental health services.  This is particularly the case for primary and community based services pertaining to people with co-morbid mental and physical health problems.  
2 December 2016 Submission

Redesign of the Practice Incentives Program

Consumers Health Forum

We welcome the opportunity to provide feedback regarding the redesign of the Practice Incentives Program. CHF supports the promotion of positive health behaviours and commends attempts to increase the rates of this occurring. Consequently, we support the proposed re-design of the PIP as we believe the current model has a number of structural shortcomings.

30 November 2016 Submission

Revalidation of Medical Practitioners

Consumers Health Forum

CHF strongly supports in-principle the need for the introduction of revalidation of medical practitioners, and its fundamental purpose of ensuring public safety in healthcare. Australian consumers must be able to have complete faith in the safety and quality of healthcare services. This is a zero tolerance requirement for consumers, as unsafe care is obviously completely unacceptable.

28 November 2016 Position Statements

Joint statement with the National Health and Medical Research Council

The National Health and Medical Research Council and the Consumers Health Forum of Australia have released a revised joint statement reflecting the growing recognition of the place of consumers and community in health research.

The Statement on Consumer and Community Involvement in Health and Medical Research revises the initial joint statement released by the two organisations in 2002. The CEO of the NHMRC, Professor Anne Kelso AO, and the CEO of CHF, Leanne Wells, say that in recent years the importance of consumer and community involvement in research has become more widely recognised.

24 November 2016 Health Voices
Consumers Health Forum

Big changes lie ahead for health care in Australia. Workforce roles are in flux while care gets more individually focused. This edition of Health Voicesexplores the question: Health consumers and workforce – are we engaged?

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