Tara Montgomery: Claiming our power as health citizens in an age of overdiagnosis

For over a century, the consumer movement has been a powerful force for protecting the public, promoting a fair marketplace, and giving consumers a voice. Advocacy organisations around the world with the word “consumers” in their names remain essential champions of public health and social justice. Yet in the context of contemporary healthcare, the term “consumer” has become an uncomfortable one among some of us who fight for the public interest and for equity in decision-making. 

Questions of terminology frequently arise during conversations about improving healthcare. Many commentators make a case for recognising patients and families as people, not consumers. These themes resurfaced during the planning of the Preventing Overdiagnosis conference being held in Sydney from 5-7 December 2019, and led the Scientific Committee to consider use of the word “citizen” as an alternative to “patient” or “consumer.”

In the context of overdiagnosis, both “patient” and “consumer” are especially problematic. The community of researchers, clinicians, and lay people working to prevent overdiagnosis share concerns about issues such as overmedicalisation, the troubling expansion of disease definitions, and the overuse of certain screening and diagnostic tests that fail to lead to better health outcomes. Such a culture of overdiagnosis turns us all into patients and consumers unnecessarily. So the problem of overdiagnosis turns out to be a useful example for reflection on the roles we are expected to play as we strive to live (and give) healthier lives.

In the United States, where “consumerism” has been the model for healthcare delivery for decades, the term has been elevated by many in the healthcare “industry” as a means to give citizens (as significant payors of their own healthcare) enough “skin in the game” to reduce waste and overuse. Yet this strategy depended on a radical shift in quality and cost transparency, health literacy, patient engagement, self-management, and retail-style consumer behaviours. These things have been impossible to realise in a complex, emotional, and unfair healthcare marketplace where the balance of power could never be authentically shifted to consumers. The drive for consumerism hasn’t solved much. And overconsumption hasn’t gone away, either. Can a shift in language be a catalyst for positive change?

In an era of polarised (even racist and xenophobic) opinions about nationality, immigration, and migration, “citizen” is sadly a loaded word. In the United States, Australia, and elsewhere, challenges to the idea of universal healthcare as a human right and concerns about the burden of high costs and levels of utilisation can trigger the idea that “non-citizens” should not be guaranteed affordable access to the healthcare system. Yet such an appropriation of the word “citizen” takes away from the notion of citizenship in a bigger sense, not limited by who is deemed to be, and not to be, a citizen. At its best, citizenship is open, inclusive, just, and participatory. In that spirit, it is compelling to reclaim and champion the word “citizen” as the most appropriate and powerful term to describe the members of a population who have the unconditional right to maximize their opportunities to live healthier lives.

Imagine that we are all citizens of democratic healthcare systems. We participate as co-creators, as stewards, and as stakeholders. We exercise our democratic right to provide input into policy, priorities, allocation of resources, and to advocate for the public good. As citizens, we are invested in making the system work for ourselves collectively and individually. Our participation is as active or passive as we wish. We understand our choices. We recognise that healthcare is interdependent with other aspects of our lives and wellbeing. We value a society that centres our values and preferences. We trust in the accountability of the healthcare system to the citizens that it serves. We expect transparency and truthful information. We exercise our social rights, our consumer rights, and our privacy rights. We own our responsibilities. We use our public voices to advocate for our needs to be met in a world of rapid environmental, scientific, and technological change and shape the future. We believe in progress. We know we are assets and not liabilities.

Unlike “patients,” we are not defined by our diagnostic labels, health status, or relationships within the system, nor are we necessarily engaged in personal or family medical decision-making at a given time. Unlike the “public,” we are not held at arm’s length from those whose professional credentials or control over resources give them power. And unlike “consumers,” we are not expected to be participants in rational, market-based transactions. In an age of overdiagnosis, it’s time to claim our power as health citizens even in contexts where it feels risky to use the word “citizen” itself. Whatever words we choose to identify ourselves, let us pause and choose language that reflects our aspirations to belong to a culture of health.

Tara Montgomery is founder and principal of Civic Health Partners, a US-based consulting practice that advises healthcare leaders on culture change and building the public trust. She formerly led Health Impact at Consumer Reports, the world’s largest consumer organization. She is a member of the Scientific Committee for Preventing Overdiagnosis.

Competing interests: Tara Montgomery is an independent consultant and citizen advocate. She has received advisory board fees from PatientsLikeMe and consulting fees from the non-profit organizations Consumers’ Checkbook and OpenNotes. She has accepted travel expense reimbursements to attend meetings hosted by various US-based non-profit health organizations.