Health Activism & the Knowledge Society: Engaging Consumer/Citizens in Shaping Health

We are partnering with the University of Canberra to complete a research into the effects of health care consumer and citizen engagement in health policy.

Assoc Prof Anni Dugdale competed interviews with key informants in November and December last year and is working through documentary evidence.  The preliminary findings will be shared at a conference in April.

The two day conference presents opportunities for consumers and policy makers to hear about the role on the consumer movement and citizen engagement in development our health system.  There will be a number of local and national speakers and a number of interactive sessions to identify future directions.

Questions include:

•  What does it mean for health consumer organisations to partner with governments, health professionals, and others to engage citizen participation in health policy and health system design and governance? 

• How are health activists (and their organisations) negotiating the advantages and the pitfalls of being inside the tent (when they are), without losing their integrity and independence as health activists, or their vision for broader agendas that cross the boundaries between government departments? 

The details of the conference is on the UCAN website.  Numbers are limited so we suggest you register soon.

Health Activism & the Knowledge Society: Engaging Consumer/Citizens in Shaping Health 
Thu 4 April 2013 to Fri 5 April 2013 
Clive Price Suite, Building 1, Level C, University of Canberra
Speakers include Celia Roberts, Evelyne de Leeuw, Helen Meekosha, Sophie Hill, Anni Dugdale, and Catherine Settle.  

To register, click on this link.

It promises to be a very interesting couple of days. 

Darlene Cox
Executive Director

 

The Australian Health Care Reform Alliance

The Australian Health Care Reform Alliance, AHCRA, is a coalition of peak health groups working towards a better health system for Australia’s future, stating its vision as:

'a health system that assists individuals to be healthy and delivers compassionate and quality health care to all'.

The Federal Government has embarked on a major health reform initiative, involving making significant changes to the ways in which health care is funded and delivered. AHCRA supports the overall goals of health reform and is working to ensure that the reform measures deliver a fairer, more efficient and sustainable health system.

On 30 January 2013 the AHCRA Executive convened a one day workshop to discuss planning for the year ahead. HCCA is a member of AHCRA and Sue Andrews and Russell McGowan attended the meeting. What follows is a summary of AHCRA’s work in monitoring progress of the Federal Government’s health reform agenda to date. It is based on a report prepared by Dr Tony McBride which framed the day’s discussions and informed consideration of work for the upcoming election year.

For AHCRA, the health system’s underlying principles should be based on:

• Equitable access
• Equitable outcomes
• Primary Health Care
• Community engagement and consumer participation
• Workforce
• Efficiency

Using six criteria developed from these principles AHCRA undertook an analysis of how new policies and funding mechanisms/initiatives would:

• create positive permanent changes to what health care was provided (not just more of the same)
• increase effective preventive effort/early intervention and better integrated multi-disciplinary primary health care
• improve equitable access to health care, especially primary health care
• ensure stronger consumer, carer and community engagement in both care and planning 
• increase efficiency of use of resources and workforce
• create a more rational split of responsibilities between governments.

These were applied to the areas of health reform: hospitals funding, primary health care, aged care, mental health, dental care, health prevention, eHealth and workforce issues.

Whilst the analysis reflected a broad-brush assessment of each initiative, what emerged was a ready shorthand summary of progress. However, noting this qualification, it indicates that:

• Most of the initiatives are permanent (as much as one can say) in nature (e.g. not short-term funding, or trials)
• Less than a third are aimed at increasing a focus on prevention or early intervention
• Less than a half are aimed at addressing inequities
• Few address increasing the involvement or centrality of consumers or community in the system
• About a half seem to be addressing efficiency
• About a third seek to clarify funding/policy/service delivery responsibilities
• Some key disadvantaged groups, especially those typically hidden such as people with an intellectual disability, are not identified as requiring specific strategies.
• Overall this amounts to a picture of disjointed incrementalism with some progress but a disappointing level of action on some of the most important issues to AHCRA members
• There is still a long way to go on the long and winding road.

Overall, the reforms appear to be moving in some of the right directions although overall modest in nature and patchy. Positives of the reform process and other Federal Government initiatives in the last three years include: 

• The recent national dental package, with its reform of at least the child and adolescent system, is a significant gain, and creates some of the building blocks required for a future universal system
• Greater funding into innovative areas of mental health provision
• Establishment of Medicare Locals (MLs) as supports for and change agents for reform and improvement in primary health care. In particular their population health planning will create shared understandings of the local system (currently not available) and a platform to address the gaps identified. The MLs also offer new opportunities for community engagement.
• Other initiatives offer the opportunities for a more nationally consistent system, and one where the efficiencies gained in some states can be spread across the remainder (e.g. in hospital care pricing).
• And although not strictly part of the reform process, the Federal Government’s legislation for tobacco plain packaging was a major gain.

However, for many initiatives there is too little implementation progress so far to measure what has been achieved. The vast majority of health consumers would have noticed little impact so far, so judgement on many reforms may have to wait a year or two to be valid. And for some, implementation will need to be closely monitored to ensure that the anticipated benefits are achieved.

However there is also a range of important gaps and system flaws that have not been adequately addressed or even recognised at all. So in some key areas there has been no or little progress, including prevention (whose share of the national health budget is going backwards)^[1], consumer participation and moving towards consumer-focussed services, and action to meet the needs of some identified vulnerable population groups, including people with intellectual disabilities.

The fee-for-service model remains unscathed despite its many drawbacks including constraining innovation. In other areas there has been only very modest progress (e.g. in increasing the equity of the system, so for example mal-distribution of services and professionals remains chronic in many parts of Australia and out-of-pocket expenses for consumers continue to rise, hitting the poor hardest). There has also been some action in workforce, for example to improve the availability of allied health professionals in rural areas, but it falls far short of the need (and has been exacerbated by the wholesale slashing of allied posts by at least one State Government).

Two key challenges present themselves for AHCRA and its members. The first is to continue to advocate for the gaps to be addressed, albeit in an environment where the appetite of the major parties for significant reform appears sated. The second is to identify opportunities to influence the effective implementation of the current reform agenda, especially those addressing equity, the strengthening of prevention and primary health care and reducing demand on hospitals, so that such reforms achieve the maximum possible benefit to the community.

For more information about AHCRA see www.healthreform.org.au or contact HCCA.

Sue Andrews

HCCA President

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[1]Australian Institute of Health and Welfare 2012. Health expenditure Australia 2010–11. Health and Welfare Expenditure series no. 47. Cat. no. HWE 56. Canberra.^↩

E-Health Records and Consumer Privacy Issues

Up until now every doctor, clinic or hospital you have visited has maintained a separate record of your health. But now, with your consent, you can have an e-Health record (called a PCEHR or Personally Controlled Electronic Health Record) created to supplement your health records by linking key information about you. The idea is that wherever you are in Australia, no matter which doctor or hospital you visit, a summary of your healthcare information will be available to assist in your diagnosis and treatment. This information might include medications that have been prescribed to you, any allergies you might have, and treatments you may have received.

In managing your PCEHR, you can set controls specifying which healthcare provider organisations and nominated representatives may obtain access to your record. Advanced access controls allow you to limit access to the whole of your PCEHR and/or to limit access to specific documents within your record. It is also important for you to talk to your healthcare providers about the type of information that can be uploaded to a PCEHR, as well as advising if there is are any records you do not want uploaded to your record.

The Office of the Australian Information Commissioner (OAIC) recently distributed a number of draft fact sheets providing comment around some privacy issues of current relevance to the PCEHR. The topics include consent and handling of personal information, emergency access, and how to manage your e-Health record. These are the first of a range of guidance material on specific e-Health topics that will be developed by the OAIC.

The Consumers e-Health Alliance (CeHA) has brought to our attention a number of issues raised in these fact sheets. One of the main issues for concern relates to the registration process, which seems to mandate that each applicant create an ‘australia.gov.au’ account, which will link to other nominated Australian Government agencies. There is also reference made to the ‘communication benefits’ for those creating an account, but not much explanation as to how the reverse access across Government entities might work. CeHA will query these issues and welcome any other issues of concern from consumers.

At the moment, the interest and powers of the OAIC seem restricted to privacy/security issues broadly, but do not appear to cover the actual implementation and ongoing operations of the PCEHR system. The PCEHR is at the early stages and there isn’t yet much meaningful information stored in the record, but it is still important to work through privacy concerns and ensure that sufficient safeguards are in place.  The PCEHR is an opt-in system, so it’s your choice to participate. However, this may not always be the case so it is worth considering any privacy issues that might be of concern to consumers as these records develop in the future.

We will let you know when the OAIC’s fact sheets are published, or other important privacy information regarding PCEHR is available – in the meantime you might like to check out the OAIC’s Privacy fact sheet 15: Ten tips for protecting the personal information in your eHealth record.

Kathryn Briant

ACT Health Directorate recognises the role of consumer representativse

The ACT Health Directorate held an event yesterday to thank consumer representatives for our contribution to improving the quality and safety of health services.

Adele Stevens speaking at the Consumer
Representatives  Thank you event at the
Canberra Hospital

Dr Peggy Brown, Director General of the Health Directorate, spoke about the vital role consumer representatives play and the unique perspective we bring to the health care system.

Dr Adele Stevens, HCCA Vice President and one our our experienced consumer representatives also shared her experiences at how consumers can contribute to  improving quality and safety of health care.

Dr Sue Andrews, HCCA President, also spoke and below is a copy of her speech.

                                                                                                             

I’m really pleased to be here today as HCCA President - and also a consumer representative – on this occasion to recognise and celebrate the very important core business of our organisation – the Consumer Representatives Program - and the people who contribute to its success here in the ACT – the consumer representatives themselves, all volunteers who bring a great deal of experience and wisdom to their role.

HCCA President, Sue Andrews

The HCCA is committed to responsive, informed and accountable consumer engagement and participation across the health system, including health service provision, policy development, services planning, and accreditation processes.

The external review of the CRP undertaken in August last year indicated just what a good job we are doing, and also provided valuable feedback on where improvements could be made. The Consumer Representatives Program was highly regarded by the majority of respondents to the survey and by the vast majority of people spoken to during the review. Both the stakeholders and the consumer representatives agreed that the CRP is having a positive role in the health system.

HCCA consistently delivers well above what we are funded to provide, and the demand for consumer representatives and community consultation continues to increase. Last year more than 60 active consumer representatives provided input into the work of over 100 committees. But consumer participation also encompasses much more than having representatives on committees. While this continues to be a very visible and effective method of engagement, we are also developing different models of consumer participation, and our role in the development of consumer and community consultation on health policy is also becoming an increasingly important part of our work.

I think it is also good to remind ourselves that we are all consumers of health services no matter what “hat” we wear in any particular moment in our work and community lives – whether it is as a patient, carer, support person or a parent. And our experiences of the health system are informed by our age, gender, sexuality, cultural or religious backgrounds, our different physical abilities or our emotional and mental health – or any combination of the above!

So with our shared knowledge and experience it is important that as consumers we continue to work together to ensure that genuine, effective consumer participation is part of a consumer centred health care system. Successful consumer representation benefits not only our organisation, but the ACT Government and the ACT community.

We look forward to another busy and positive year ahead.

ACT health infrastructure community information session

The ACT Government is spending over $1b to shore up Canberra's health system for the future, through infrastructure development and improvements in the delivery of care. 

HCCA has launched a new program which aims to ensure that the consumer voice is represented at all stages of this major restructure of the ACT's health system. As part of this commitment to consumer involvement, HCCA is holding an information session for interested community members.

If you'd like to know more about this large scale redevelopment of the ACT's health system, come along to a free information session. Refreshments will be provided so please RSVP and include any dietary requirements.

When:     Tuesday, 5 March 2013
                  5:30pm-6:30pm

Where:    ACT Sports House

                  100 Maitland Street

                   HACKETT ACT 2602

RSVP:      By Friday, 1 March 2013
                   By phone on 02 6230 7800
                   By email at adminofficer@hcca.org.au

If you need any further information, please contact us by phone on 02 6230 7800 or by email at adminofficer@hcca.org.au.