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At the same time as scoping and designing reforms we must devise the measurements that will tell us whether these reforms are succeeding.
We want mental health system change that makes a real and positive difference in people’s lives. We want to see the evidence of high-quality, person-centred approaches to wellbeing and mental health support spread across the spectrum of activities and services – not only health but also social supports, housing, employment, education, justice and many others.
We need to know that the commitments we make to this kind of change can be monitored and measured, so that we can acknowledge, reinforce and reward positive progress. At the same time as scoping and designing reforms we must devise the measurements that will tell us whether these reforms are succeeding. This includes evaluating people’s experiences and how they fare in the longer term on their recovery journey. A mix of quantitative and qualitative data will be required to give a comprehensive picture.
We are working against a backdrop of previous reform initiatives that have been energetically pursued but not fully realised, which in turn have engendered some scepticism and fatigue. As we work towards reform, we need to continue to build the consensus for change at the same time as implementing it. Robust measurements, that are tracked over time, publicly reported and relate to things we really care about, will help us achieve this.
Agencies, organisations and mental health workers will need additional skills in information management to support expanded data collection activities. Extension of existing data linkages between government agencies and the community-managed sector will be necessary to produce a meaningful, nuanced picture of the lives of people who experience mental illness, and their support needs across many domains of health and social services.
All monitoring work should be guided by the lived experience of people with a mental illness, their families and carers. We must design structured, evidence-based ways to evaluate the success of services in meeting their needs.
This means measuring not only to the quality the of services, but their capacity to support positive change more broadly. This includes how well they integrate with other services, whether they support local decision making, and their capacity to retain their quality and remain true to their principles and objectives as they grow.
The Commission’s approach to measuring, monitoring and reporting will:
- be guided by the lived experience of people with a mental illness, their families and carers
- support reform and drive positive changes in the mental health and wellbeing of the people of NSW, at both individual and community levels
- support agencies to work collaboratively to improve mental health and wellbeing
- identify priorities for further research
- contribute to better informed public debate.
Consumer and carer experiences of care and support are not an optional extra.They should be central to our evaluations of services, and to the choices we make about the things we measure, monitor and report on.
NSW is already one of the first jurisdictions to have a framework for involving consumers in improving public adult mental health services. MH-CoPES (Mental Health Consumer Perceptions and Experiences of Services) questionnaires invite people to say what they liked as well as what needs improvement in the services they use. But response rates and use of the survey vary across the state.
The current questionnaire is being further developed as a national measure which will allow comparison with other states and territories.
The Commission is leading a project to develop new methods of data collection and reporting mechanisms, including the use of tablets, text messages and online surveys that allow people to offer real-time feedback in hospitals, clinics, the community and from home. It is hoped that by enabling people to contribute timely perspectives more easily, more people will participate and their collective insights will be more representative of the views of all consumers.
There is currently no continuing survey of the experiences of families and carers of people who live with mental illness. The NSW Carers (Recognition) Act 2010 provides impetus to look in more detail at carer experiences, and to use these to inform policy.
Consumer and carer input will also be essential in designing measures to evaluate the effectiveness of support and services. Those measures should not simply be derived from information that is already routinely collected. The measures should address things people tell us they care about, which may relate not only to health but also to social connectedness, ability to work or study, or any other aspect of the recovery journey.
Information about the quality and performance of mental health support systems should not be a secret. Anyone in the community should be able to find timely data that can help inform their decisions as consumers, carers, professionals, sector managers or researchers. This should include data on the performance of individual services. We should insist on regular public reporting of mental health data and statistics that are compatible with other data collections, support further analysis and interpretation, and are presented in ways that are accessible to all the community.
The Commission will use and, where necessary, develop measures and indicators that address the actions and overarching reform focus of the Strategic Plan, as well as the mental health and wellbeing-related targets and actions set out in the State Health Plan and NSW 2021.
The Commission supports the following monitoring initiatives and will align its activities with them.
- The national targets and indicators for mental health reform endorsed by the Council of Australian Governments Expert Reference Group, which address six foundation areas:
- More people with poor mental health will have better physical health and will live longer
- More people have good mental health and wellbeing
- More people with poor mental health will live a meaningful and contributing life
- More people will have a positive experience of support, care and treatment
- Fewer people will experience avoidable harm
- Fewer people will experience stigma and discrimination.
- The Mental Health Non-Government Organisation Establishments National Minimum Data Set, which is being developed in partnership with Australian Institute of Health and Welfare.
- In NSW, in 2011 the non-government sector accounted for 6% of state government spending on mental health, and it is expected community organisations will take on a growing role under reforms intended to minimise reliance on hospitals. It is essential in this environment that we can measure how well both small and large community organisations perform in supporting people and their recovery. The minimum data set is intended to support the collection of nationally consistent information on the activity of community managed organisations that provide mental health support, to better inform policy, practice and planning. It is scheduled for implementation in 2015-16.
The preceeding diagram shows how mental health system change, through monitoring and analysing activity, and through acknowledging, reinforcing and rewarding positive progress can come about. Activity to be monitored would include programs and work done in the health services, social supports, housing, employment, education, justice areas.