The rhetoric of participation has long been the mainstay of modern health policy. But to what extent are efforts to give people a voice in health-care policy successful, or even appropriate?
The idea of participation was elevated to a global level in the Alma Ata Declaration on Primary Health Care (1978). Governments at all levels around the world now proclaim their commitment to public participation in all dimensions of the health domain.
This has led to a rich mosaic of scholarly and practical efforts towards community development and empowerment for health in the fields of health promotion and disease prevention.
In the health-care system, participation has taken different guises, such as patients being recast as “consumers” or “clients”. However, this shift from patients to actors in some kind of market transaction has raised two issues.
First of all, it suggests that the relationship between an appropriately trained expert (be they shaman or psychiatrist) and the person seeking treatment has become a fuzzy transaction between givers and takers (or haves and have-nots).
Second, and perhaps more profoundly, this healing relationship has morphed into an economic one.
But do people in ill health, with an often profound need to be healed or a desire for better health, really want to be seen as partners in an economic transaction?
A more philosophical perspective about participation comes from a widely held position that there is inherent value in democratizing health care.
With transparent and democratic governance systems for the health-care domain, proponents of this philosophical perspective contend, we can develop and maintain better, more responsive and possibly more efficient care arrangements.
So, it’s surprising that, internationally, there’s very little empirical material that reviews and validates the role of consumers in the creation of health-care policy.
Health and democracy
In some countries, a new public management agenda (inspired by neo-liberal ideology) is embraced as offering opportunities not previously available for engaging consumer groups in the policy process.
In some Western European countries, most notably The Netherlands, “marketization” of health care has been equated with democratisation.
Such marketization enables a form of democracy where health consumers “vote with their feet”: choice will strengthen voice is the mantra.
The role of consumer groups in these countries has been strengthened through government initiatives that make health-care provider performance information universally available.
These governments also ensure universal access to services for all under national insurance schemes.
But some regard the notion of patients voting with their feet as naïve. They recognise that medical and pharmaceutical knowledge is power.
Health practitioners are strengthened in that power base by institutional arrangements like accreditation and licensing arrangements.
“Consumers”, in spite of strong government rhetoric, are often unable to engage and interpret that esoteric power base.
Some researchers argue that consumer organizations should seek their own, autonomous, ways of (re)claiming their health rights.
In some contexts, participation rhetoric seems to overwhelm consumer groups. In others, the often single-issue agendas of consumer groups enable other (health care and government) actors in the field to latch onto the community voice for their own purposes.
So, in several countries, we see a (sometimes insidious) process of co-optation between Big Pharma, health-care providers and single-issue consumer groups advocating policy change that may not best serve the health of the general population.
But there are developments in consumer engagement reinforcing the potential of broad popular involvement in health policy agendas. The growing base of Aboriginal community-controlled health organisations in this country is a case in point.
Possibly more powerful are accounts of effective consumer activism in the face of political adversity. An example of this is the global People’s Health Movement. Even in adverse conditions (e.g., Malaysia) the consumer voice can be heard.
Is health, then, democratizing? The jury is still out. In some countries, there’s recognition of severe democratic deficits. This is particularly a problem in the European Union and the United States, and around pharmaceutical issues.
In other cases, systems and spaces allowing strong consumer input in health-care policy development are being created. On the road from rhetoric to reality, people organise themselves to have their voice and choice heard. This is an unstoppable and powerful development.
Democratizing Health: Consumer Groups in the Policy Process by Hans Löfgren, Evelyne J. J. de Leeuw & Michael Leahy (eds), Edward Elgar Publishing, 2011 will be launched today at the conference – Consumers Reforming Health: The Next Wave in Community Engagement in Health Care at the Melbourne Convention and Exhibition Centre.