Government Policy: The government is actively promoting partnerships and discussion with consumers and communities. The main focus of this seems to be on Health Care Providers broadly. Aged care is not specifically mentioned. The onus has been put on providers to create contexts where the community can contribute.
The Australian Commission on Safety and Quality in Health Care has developed required standards for providers of care. The second of these is Partnering with Consumers. These standards, "Safety and Quality Improvement Guide Standard 2: Partnering with Consumers, October 2012", can be accessed from their web site but it is long and wordy on process.
Aged care is not meeting these standards. It is talking but doing nothing. It has a long long way to go.
Under the slider sections (below) I make some comments and then provide some extracts to show the flavour and intent of this wordy document.
Update August 2016: Real community engagement on the table
This web page is an analysis and criticism of the 2012 government requirement that health (and so presumably aged) care providers partner with consumers. But times are changing and there is now a large body of opinion wanting the whole sector to move beyond that. This is in keeping with modern thinking and research.
For the last 8 years Aged Care Crisis and/or its members have been pressing for local communities to have an important role in aged care, particularly in supporting the vulnerable customers. We were excited to read the recent submission by the Community Council for Australia (CCA) to the Productivity Commission inquiry into human services. This inquiry has been appointed to advise on how the Harper report pressing for greater competition could be introduced.
The CCA is speaking for 72 member organisations. It clearly sets out its opposition to what the free market approach has done to the not-for-profit sector. Its plans for the future focus not only on the vulnerable customers but on the communities in which they live. This is not what the government was expecting or wanting from this inquiry.
In areas such as aged care, for instance, the capacity to make an informed consumer choice is almost non-existent. There are no measures of quality for residential aged care, no meaningful way of comparing the care provided, no effective way of reviewing the level of encouragement for ongoing physical activity and social engagement (critical factors in maintaining quality of life). Consumers are forced to rely on word of mouth, listings of staff qualifications, or advertising material descriptions of services from the providers.
While there is clearly scope to improve the market, to make it more consumer and community driven, to ensure it is informed by the achievement of real outcomes, it would be wrong to assume contestability and competition principles can be readily applied across the existing human services market.
- - - Where, in the past, public policy interventions were ‘done to’ or ‘done for’, in the emerging policy environment policy delivery will be ‘done with’ end users and communities.
- - - - The short answer is that any new approach has to be about the customer / consumer / client, their families and communities.
Source: Community Council for Australia (CCA) Submission 193 to the Productivity Commission Inquiry Into Introducing Competition And Informed User Choice Into Human Services 25 July 2016
The Community Aged Care hub is a proposal that places the customer, their families and the community at the centre of aged care and gives them the power to engage with the providers of care in a way that ensures the service they want is delivered.
The Community Council also stressed the absence of useful data in the human services sector. That is a core function of the proposed hub.
Comment on the standards
Problems in the Standard: Standard 2 is directed towards providers of health care rather than aged care specifically. We are concerned that once again the focus has been placed on providers. They can potentially select which community groups they will approach to partner with, and decide what they will choose to offer the community in order to meet the standards.
The proposed hub addresses this deficiency by putting the community in an equal if not stronger position in this regard. As customer the community is ultimately in control. The community can jointly decide who, what and how, the community contributes towards the process, in order to improve standards and safety. The objectives of the standards would be better met.
Aged Care is different: The needs of aged care are sometimes different to other health care sectors. For example, in aged care, community and consumer advice is particularly important when protocols to keep the elderly safe interfere with residents' quality of life to the extent that the risk should be accepted. This community involvement would be important in supporting the facility should they be sued when an injury occurs. Too often quality of life is sacrificed by excessively limiting activities in order to protect the facility from litigation.
Benefits of Partnerships: Aboriginal Health has struggled under the paternalism of the past. Giant strides have been made since a policy of partnership with aboriginal communities was introduced. The Safety and Quality Improvement Guide references studies in multiple countries including Australia, that attest to the benefit of partnering with communities when providing health services.
Current Failure to meet these standards: The many reports, and the extent to which unhappy family members have gone to the media show the extent to which the aged care sector has failed to meet these partnership requirements, and how remiss it has been in really engaging with its critics in the community.
Experiences in partnering: Success and failure
An important article "Partnering with consumers: national standards and lessons from other countries" published in the Australian Medical Journal, page 134—6, August 3, 2015 by Stephen and Melinda Gill examines the implementation of these standards for community involvement in health care.
Successful examples: There is plenty of evidence that community involvement when successful results in improvement in the services provided, particularly when there are cultural differences. Aboriginal health is a good example.
They authors are cautious about implementation stating that "the examples suggest that effective customer participation requires a fundamental shift in how both consumers and health care providers define their roles and responsibilities".
What was needed: They point out that participation can be tokenistic and ineffective. It has to go beyond engaging with selected individuals. It must engage the whole community.
They examine several examples internationally to see when they worked and when they failed. They found that the community’s priorities might not be the same as those of the health services and that the health issues might not be addressed until the community had first addressed their priorities.
The community needed to have responsibility and control so that there were outcomes from their involvement. Projects do not work if they fail to engage the communities and this is why there were many failures.
Trusting, respectful and involved relationships were needed and the providers often needed to immerse themselves in the community. Professionals protecting their positions and priorities could be the greatest barrier. It was vital that they relinquished control. They quote an example where government took control of a successful project which crumbled and failed as government bureaucracy cook over. The community needed to set the agenda and control it.
My conclusions: Both governments and large corporate organisations structure their activities within guidelines and control structures. The nature of their operations requires them to do so. My conclusion from examining this article is that this will make it extremely difficult if not impossible for them to initiate and support effective community participation. One can conclude from this that this initiative which focuses on providers of services is not really going to work. There will be many tokenistic and ineffective examples as they try to show that they are complying.
The hub would address this: The proposed hub has the same objectives but would avoid these problems as it would be initiated and controlled by the community. As customers they would have control and corporate success would depend on giving the community what they wanted. To succeed the companies would have to change and do exactly what this study shows works.
Success would still depend on two things:
- First, the community must be willing to engage and give enough of their time to drive the process.
- Second, governments must be willing to trust the community and support them without exerting control.
Debris of the 20th century littering the 21st
Hope for the 21st century: An insightful article in The Australian published on 1st January 2000 was hopeful about the 21st century but with reservations. The reservations related to "the debris of the 20th century littering the 21st". In retrospect this can be seen as prophetic.
Focusing on the 21st century: There have been social movements and insightful groups in Australia and globally, writing, exploring and experimenting with new forms of democracy. These aim to give citizens a far greater and much more important role in structuring, organising, implementing, operating and making policy at all levels in society and in politics.
While some government reviews have addressed these ideas I feel that many recommendations and the actual implementation have often been tokenistic because they are unable to relinquish control. Both major political parties are trapped in a straight jacket of late 20th century thinking and they cannot let go. This contributes to what is happening in politics and to society’s disillusionment and despair. The way out will come from a community that confronts and addresses the issues and not from our corporate and political leaders.
The Debris: Critics describe a "hollowing out" of communities as government and large corporations set the agenda and then seek community affirmation for what they propose. When they do get community input they cherry pick what they want from submissions solicited from the community.
Community knowledge, experience and confidence are lost as their lives are organised and structured from above. What is happening in Australia and particularly in aged care is a good example of the 20th century littering the 21st. The hollowing out of aged care knowledge and involvement in our communities is a consequence. Most citizens are no longer engaged.
Debris in aged care: I think that aged care is a prime example of this. Aged care decisions and planning has been done by an industry dominated group called NACA (National Aged Care Alliance) working closely with government. There has been very limited community participation. NACA’s plans are taken to a community that has not been well informed or involved in the generation of ideas - seeking affirmation. They present themselves as credible and knowledgable. Not surprisingly, they get approval from a community that is not fully engaged. As is illustrated in the previous slider, it it is much less likely to work if the community is not actually involved in decision making and really behind it.
21st century ideas: These new ideas are underpinned by a new philosophy about empowered citizenship and about citizen participation. They also address the role of the disadvantaged and marginalised. The focus on services is on accepting the disabled as participating citizens bringing useful insights and able to contribute.
The focus is on organisational structures and decision making processes that start with citizens, particularly those directly affected. It builds from that. We have a number of projects and processes that are being tried and many have been shown to work when communities really engage.
The breadth of names and terms used speak to the nature of the debate and the focus. They include "participatory democracy", "citizen’s juries" (not judicial but decision making), "a new democracy foundation", "co-designing social initiatives", "community level governance", "generative democracy", 21st Century Dialogue" etc.
This is a broad and still fragmented movement exploring better ways of structuring our society. The focus is on citizen participation and control of policy and decision making processes. These processes not only tap into the large resource of real world experience, knowledge, intellect and commitment within our societies but create a context where the community itself engages, is involved, gains knowledge and insight, feels empowered and identifies with society’s objectives because they are their own.
In Part 4, where I attempt to stimulate your thinking so that you develop ideas of your own. I will give links to information about many of these projects but I do not want to distract you further here.
The Community Aged Care Hub: While the proposed community aged care hub focuses primarily on addressing market failure in aged care it is situated broadly within this 21st century movement. The projects within this movement have been initiated by thinkers and academics who have promoted the ideas and involved citizens by organising groups to engage in these activities. The proposed hub would take these initiatives one step further. It asks the community itself to embrace ideas like this and drive the whole process of organising and designing itself. Citizens are more likely to get what they actually want. As you look at my proposal to make the failed aged care market work you might keep this additional pattern of thinking in mind. Be independent, look at what others are saying too and come up with ideas.
What I am proposing will "institutionalise" these ideas and processes within society so that they become the way that sectors that benefit from this approach operate. The proposed community aged care hub would be driven by a mix of disadvantaged frail elderly, their concerned families, experienced seniors (currently sidelined by the ageism in our society), health associated professions and a community whose members will all be old and vulnerable one day. Ageing affects almost all of us and the aged care sector is therefore particularly well placed to take these ideas forward.
Quotes from the standards
The Standard 2 document: The standards document is long and complex. To help readers get the gist of the proposals a selection of quotes from it are included below. They indicate the scope of the partnerships that government requires. Aged care is an important component of health care in Australia. Elderly residents, whether at home or in nursing homes, are more vulnerable and less protected than in the rest of the health system. Partnering has much to offer.
Source: Safety and Quality Improvement Guide Standard 2: Partnering with Consumers, October 2012 (Australian Commission on Safety and Quality in Health Care)
Page 3: Standard 2: Partnering with Consumers sets the overarching requirements for the effective application of the other eight NSQHS Standards which address specific clinical areas of patient care.
Page 4: When clinicians form partnerships with patients and carers, not only can a patient’s experience of care be improved, but the design and planning of organisational processes, safety systems, quality initiatives and training can also be more effective.
The role of health service senior executive and owners is - - - - -. Explicit support for the principles of consumer centred care is key to ensuring the establishment of effective partnerships between consumer, managers, and clinicians.
Page 5: Critical friends group: A small group of consumers, carers and/or healthcare providers with experience and/or expertise relevant to your healthcare organisation. The group is convened to provide advice and feedback to your healthcare organisation on specific issues, including safety and quality improvement activities.
Page 6: In 1978, the Declaration of Alma Ata stated that ‘The people have the right and duty to participate individually and collectively in the planning and implementation of their health care.’ Since then, there has been an emergence of policies promoting the rights and responsibilities of consumers and carers within the healthcare system, and an increasing focus on consumer and carer participation and collaboration in the planning, design, delivery and evaluation of health care. There has been a slow but steady shift towards the recognition that healthcare providers, healthcare organisations, consumers and carers are all partners in the healthcare system.
There is evidence to show that the involvement of consumers in service planning, delivery, monitoring and evaluation is more likely to result in services that are more accessible and appropriate for users.
This Standard aims for meaningful and active consumer participation in your organisation’s systems and processes.
Partnership with consumers and carers involves using multiple strategies and processes to involve consumers and carers in different aspects of your organisation's governance and structure.
Page 7: Consumers and carers can be people who currently use your health service or people who have used your service in the past; they can be representatives of community groups, consumer groups or disease-based advocacy groups. Consumers and carers can be interested in contributing to your organisation as a patient, as a general consumer of health services or as a citizen interested in improving health care generally. Rather than partnering with only one person it is often useful to include a range of consumers and/or carers in your partnership activities to ensure that different voices and views contribute to the design, delivery and evaluation of health services.
Page 9: The organisation asks consumers and/or carers and the community to identify an issue and make all the key decisions on the development of solutions to address the issue. The organisation supports them to accomplish this.
Page 10: Involving consumers in the governance of healthcare organisations is an important part of the process of establishing effective partnerships. Consumers have a unique position and perspective which can help to identify opportunities for improvement at an individual and organisational level, which otherwise might not be identified through usual processes. Partnering with consumers in governance is about listening to and using consumer knowledge, skills and experience in a systematic way, to deliver better health care.
Partnerships with consumers and carers can be demonstrated through strategies such as the involvement of consumers and carers on boards or committees, establishing consumer advisory committees, working with individual patients to shape safety and quality initiatives, seeking and acting on consumer experience feedback or co-opting consumers into the planning and design of health services, among many other approaches.
Page 11: Key task: Implement a framework which requires the involvement of consumers and/or carers in the clinical and organisational governance of the organisation.
Page 22: Internationally there has been increasing focus on partnering with consumers through health service redesign, co-design or experienced-based design projects. There is now emerging evidence that involving consumers in the planning and design of health service environments and services can have significant benefits in terms of strengthening relationships between staff and consumers, as well as helping to reorient services to the needs and preferences of the consumer.
However, one English study identified that lack of knowledge about how to train health professionals to deliver consumer centred care and achieve partnerships with consumers was a barrier to change.
Page 23: Key task: Implement a systematic process for involving consumers and/or carers in the identification, development and implementation of design and redesign approaches
Page 26: Key task: Implement a policy which includes the involvement of consumers and/or carers in the design and delivery of workforce training
Page 28: Consumers and/or carers receive information on the health service organisation’s performance and contribute to the ongoing monitoring, measurement and evaluation of performance for continuous quality improvement
This includes a move towards increased public reporting of data, as well as utilisation of this information at the local level for improvement purposes.
Partnering with consumers and/or carers in the review and analysis of performance monitoring data, and in the application of that feedback to quality activities, provides a valuable opportunity to engage consumers in quality improvement.
By involving consumers and carers in the process of analysing feedback you can use their expertise to guide the development of appropriate improvement strategies. By partnering with consumers and carers in these processes you can improve the interpretation and application of consumer and carer feedback, which in turn has potential to increase the likelihood of selecting appropriate and acceptable quality improvement activities for implementation.
Page 31: Key task: Implement a process for involving consumers and/or carers in the review and analysis of organisational safety and quality performance information
Page 33: Key task: Implement a process for involving consumers and/or carers in the planning and implementation of quality improvements
Page 35: Key task: Implement a process for involving consumers and/or carers in the evaluation of patient feedback data