Why don’t we see consumers as regulators?
For many, discussing "regulation" is about as enjoyable as watching paint dry. Or maybe drinking it.
If you can stomach a brief discussion, I'd like to float some personal ideas about mental health services & consumer regulation.
Pick-pocketing some of the work from Healy [1] and Maddison [2], I want to make the case that consumers already take on a regulatory role in the mental health system. But they can do more, with the right support.
We focus our attention & resources on top-down regulation
When we think of regulation, we ordinarily think of top-down frameworks, starting with government plans & departments, followed by institutions such as complaints bodies, AHPRA and the Ombudsman. These pick up the individual concerns of consumers and seek to resolve them in a prescribed fashion, under a legislated framework. This model is effective in many ways, but does place much of the information, power and agency away from consumers.
In an era of rights-based care and participatory governance, we can do better than this. People with lived experience are enjoying increasing (but still inadequate) representation in service governance & public debate. Consumers are also taking up and attempting to exercise their rights under the Mental Health Act and Charter of Human Rights and Responsibilities Act.
When consumers speak up, they are changing the system for better. They change it by how they communicate and how they expect to be communicated to. They change it by using the law and making complaints, establishing what is OK and what is not OK. They make the system better for the next person who uses it. This is human rights advocacy. Its also bottom-up regulation.
How can we make change?
However, real and meaningful bottom-up regulation requires top-down support. In the absence of this, we risk adopting another "consumer" model or ideology that imposes all of the burden and little of the power on an individual, leaving services and the system unchanged.
So what is needed? Some things include:
Framework - a framework and plan for self-advocacy as human rights advocacy & regulation. More legislative support and recognition of the system role self-advocates play. You could call this a legally authorizing environment for consumer-regulation
Culture - a culture that sees speaking up as human rights advocacy and regulation. You could call this a morally authorizing environment for consumer-regulation.
Real information - more information on the system and the real levers of change. The machinery of the system and government are complex, with the spaces and opportunities to make change often opaque. This means consumers need real information about how they can affect real change
Funded networked regulation - funded opportunities for consumers to network and share their skills and ideas around the system, self-advocacy and regulation. This reduces the individual burden on consumers, and connects them to their human rights colleagues
Transparent data - information about the services that consumers use - sometimes involuntarily. There needs to be clear service-specific data available to consumers to make informed choices and regulatory acts
Such changes are being argued for already; the ideas of bottom-up and networked regulation are just another point in their favour.
Perhaps discussions around networked and consumer-led regulation could inform our upcoming Royal Commission?
[2] Madison, K. (2010). Patients as “regulators”? Patients’ evolving influence over health care delivery. Journal of Legal Medicine, 31(1), 9-34.
