Does 'consumer' activism make health policy more democratic? Deakin researchers ask

Deakin University and a group of international experts have given health policy around the world a thorough examination to assess the democratising role of consumer groups.

In their book Democratizing Health: Consumer Groups in the Policy Process, Dr Hans Lofgren, Professor Evelyne de Leeuw, and Dr Mick Leahy, all of Deakin University, explore the role of consumer groups in the development of policy affecting their members' health and health care.

The book will be launched next Monday (18 July) by Shadow Minister for Health (Victoria), Mr Gavin Jennings, MLC.

"The health sector," Dr Lofgren explains, "makes up a large chunk of the economy in developed countries and is a major employer. For example, in the Barwon South Western region, where three of Deakin University's campuses are located, it is the largest single employer."

"The health policy domain is becoming more crowded as more people want a say including patients and 'consumers'. Such involvement may be referred to as the 'democratization of health', but, as the contributions to this book show, there are considerable differences between national contexts as to what this means," Dr Lofgren explained.

"Across all countries, we can say that it is no longer the case that consumers or patients tacitly accept what they are being told by authorities and the medical profession.

"In Australia there is a plethora of consumer organisations, associations, patients and consumer groups that take on a range of roles from self-help – supporting their members and families of people suffering from disease – to broader roles including the provision of services, representing their constituents in their interactions with the medical profession and lobbying and participation in health policy."

At both State and Federal level , Dr Lofgren added, consumer organisations are invited to nominate people as representatives on boards, committees and consultative structures.

"The rationale for this is that those people who are affected by the policy should have the opportunity to have a say," he said.

"Also it is commonly believed that policy is generally better and more likely to be accepted and effective if consumers' representatives have participated in the policy development."

Dr Lofgren pointed out however that the democratic quality of this involvement is sometimes complex. It is not always the case that groups representing, or advocating on behalf of, patients or consumers are effective in doing so. Co-option into established networks of power and authority potentially compromises the independence of patients and consumers in Australia and elsewhere.

There were also questions about consumer groups' relationships with the pharmaceutical industry.

"It is a murky area," he said.

While the contributors to the book share a commitment to democratising health, their understanding of what that means, and the contexts in which they have to work, differ considerably.

The editors have refrained from applying any measure of democracy to all, and have instead tried to present a profile of the diverse understandings of democracy and contexts of practice to be found in today's world.

In some countries, some of the authors argue, neo-liberal policies and market exchange give health consumers new opportunities. In others they are seriously challenged. The book gives hopeful examples from some areas (Aboriginal health, Malaysia, the People's Health Movement) where patients-turned-consumers democratically engage with health policy.

But the editors are critical of thinking that reduces patients and consumers to mere purchasers of goods and services.

"The problem with this approach to democratizing health is that it reduces democracy to a purchaser's entitlements. But a democracy is not just a group of purchasers but a union of citizens whose entitlements extend to shaping policy, not just to purchaser entitlements."

Further information:

The launch: will take place on Monday 18 July, 11 am, at the Consumers Reforming Health: The Next Wave in Community Engagement in Health Care conference at the Melbourne Convention and Exhibition Centre (MCEC), 1 Convention Centre Place, South Wharf in central Melbourne.

The book: Hans Löfgren, Evelyne de Leeuw and Michael Leahy (eds), Democratizing Health: Consumer Groups in the Policy Process, Edward Elgar, 2011.

The conference