Patient Experience

Patients, Consumers, Customers and Partners: What’s in a Name?

In the words of Editor Alan Weill, the current issue of Health Affairs “analyzes the ups and downs of expecting patients to act as consumers” and delivers much to think about. Whether and how patients act as consumers or should be considered customers of healthcare businesses has been debated extensively, without clear resolution. Using the word “patient” sometimes causes trouble, as it implies a passive and subservient role. While few would openly argue against the goal of including patients as true partners in care, the experience is rare. Individuals function in so many different roles as they navigate through healthcare experiences and the transactions are so varied, no one label will suffice.

Photo by Indiana Stan, CC BY 2.0, www.flickr.com/photos/photosbystan/6277857364

Many people point out that patients have every right to the kind of information, choice and control they expect to have as consumers in other settings. Healthcare decisions, after all, are among the most consequential decisions most people make, with serious implications for economic as well as physical and mental health. While there’s no question the consumer analogy embodies a kernel of truth, many healthcare decisions are qualitatively different than decisions in other consumer situations. It’s rare that pricing and quality measures are transparent enough to truly inform a decision, say about surgery or cancer treatment. And if they were available, the consumer in question is likely to be in pain, distracted and dislocated from his or her normal life – circumstances quite different from a standard consumer experience.

The Health Affairs issue focuses primarily on issues related to treating patients as consumers but does so broadly, touching on many roles and important current trends.

In “Patient-Centered Care, Yes; Patients As Consumers, No,” experts from the Hastings Center, an independent bioethics research institute based in New York, argue that the consumer model puts undue pressure on patients to reform healthcare: “A consumer metaphor places disproportionate burdens on patients to reduce healthcare costs, and it could erode professional obligations to provide appropriate and effective care.” They go on to trace the changing role of the patient from the introduction of “patient-centered care” in the 1960s, to the concept of care as a partnership among care providers, the patient and family members; to patient engagement and activation and more recently, consumer-driven care, terminology that appeared in political altercations about U.S. heathcare reform.

In addition to the article (which requires subscription) Health Affairsoffers a free podcastdiscussion of these concepts with Michael Gusmano, one of the Hastings authors.

A Narrative Matters article in the issue provides a vivid example of a patient and family members who should not be expected to act like consumers. In “My Child Is Sick; Don’t Call her a ‘Consumer,” Hala Durrah describes her daughter Ayah’s grave childhood illnesses and what it has been like to manage her care as well as her own needs and emotions. Now a patient and family engagement consultant in Washington, D.C., Durrah knows healthcare inside and out and understands its systems from a quality improvement perspective. She is unusually well equipped to be a savvy consumer. But she also understands that healthcare, especially in the trenches of acute care, is not transactional. She sees value in the goals of consumerism in healthcare – to improve transparency, responsiveness and choice – but thinks it is a serious mismatch. She points out that healthcare is grounded in relationships and service to others. With great optimism, she says, “Only when we engage and partner to co-create solutions can we address our most complex challenges in healthcare.”

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 45 post(s) at EngagingPatients.org

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