The world—including the healthcare system, but also including technology, consumer demographics and preferences, and the broader society—is changing rapidly, says Michael L. Millenson, president of the Highland Park, Ill.-based Health Quality Advisors consulting firm; and patient care leaders need to understand where things are really going. That’s why Millenson authored an essay published on July 5 in The British Medical Journal (BMJ), entitled “When ‘patient centered’ is no longer enough: the challenge of collaborative health.”
As Millenson notes in that BMJ analytical article, “A quarter of a century ago, researchers proposed ‘patient-centered care’ as a conceptual framework that ‘consciously adopts the patient’s perspective’ about what’s important in interactions with providers and institutions.” But, he says, “Today, technological, economic, and social changes are moving healthcare in directions unanticipated by the patient centeredness pioneers. It’s not that patient centeredness no longer pertains; rather,” he says, “it’s being subsumed under these larger forces reshaping 21st-century medicine.” As a result, he says, “I suggest ‘collaborative health’ as an umbrella term framing how clinicians should respond.”
Importantly, Millenson notes in his BMJ article, “The digital health domain provides some of the most visible evidence of this shift. Increasingly, people can find, create, control, and act on an unprecedented breadth and depth of information. For example, according to its website the for-profit patient network and research platform PatientsLikeMe has amassed more than 520 000 patient profiles for more than 2700 conditions, filtering data reported by patients through analytical tools in an independent online collaboration. Although most PatientsLikeMe users are American, participation in this and similar platforms will grow as the digital divide continues to diminish. In 2015, more than half of adults in 21 emerging and developing countries reported using the internet or owning a smartphone (rising to 87% in 11 advanced economies). In 2017, an estimated 8.4 billion objects were part of the “internet of things” (sensors and web connectivity in everyday objects).” And he quotes Tim Berners-Lee, PatientsLikeMe’s creator, as stating that people can increasingly “integrate data from diverse aspects of life—financial, medical, home automation—and control what to share with whom.”
The implications of all these different changes are enormous, Millenson argues; and they change the landscape of what “health” means, in some very practical ways. On the one hand, the whole “patient-centered care” concept remains deeply provider-centric, despite its name, as the centering still takes place within the context of the traditional healthcare system: hospitals and physician practices can strive for “patient-centeredness,” but the system remains the locus. In reality, he asserts, we are gradually moving towards a new world in which people—who are sometimes healthcare consumers and sometimes patients, but who have identity and agency outside those definitions—are going to be interacting with the healthcare system in new and different ways.
The fact that a large plurality of Americans are living with chronic disease, at a time of greater personal agency than ever before, and the availability of broader technological supports for healthy living, is changing the landscape in some fundamental ways, Millenson argues. For example, he notes, “Chronic disease is implicated in 60 percent of all deaths globally, prompting more intense attention to the socioeconomic conditions that affect health. The result has been an upsurge in interventions by organizations that bear financial risk for medical costs. Their purview has expanded both to areas once thought to be reserved for clinicians, such as drug adherence, and to the work of social service organizations. In the U.S., for example, some health plans have been helping members with food, shelter, and even finding a job.” In other words, health and not just healthcare, will be the playing field on which interventions increasingly take place; and that will lead to greater empowerment of healthcare consumers, and their interactions with a broader range of individuals and organizations around their health. In short, people themselves will be directing how they interact with the system more and more, he argues; and it’s time for the leaders of patient care organizations to wake up and smell the coffee on all of this.
In that context, Millenson spoke recently with Healthcare Informatics Editor-in-Chief Mark Hagland regarding his BMJ article and the concept of collaborative health, as he has articulated it. Below are excerpts from that interview.
Fundamentally, in your BMJ op-ed article, you are urging healthcare leaders to rethink how they interact with consumers, and to end their healthcare system-centric perspective on those interactions, correct?
Yes, that’s right. The key here—people want to look at e-health, and at the social determinants. But collaborative health looks at both. Economics and technology—the old boundaries between them are dissolving. And it’s not that the old healthcare system is being completely disintermediated—when you’re sick, you need professional care. But the old healthcare system is being disintermediated not only by technology, but by other actors. You had an article where you referenced the NEJM’s article where the author talked about wearables. And the reality is that you’ll need to be able to accept and ingest data from self-management.
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