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.
And collaborative health says that, for maintenance of well-being, and for sickness care, there’s a new paradigm. Sometimes, individuals will be collaborating with the healthcare system; sometimes, they’ll be doing self-care. Sometimes, they’ll be collaborating with others. If a care manager puts in remote sensors into someone’s apartment, that’s technology, but it’s blended. And value-based payment is incentivizing changes. But it’s also technology, where people have the ability to self-manage. Or you’re illiterate, and someone gives you the tools to self-manage. It’s not just for rich people or yuppies, it’s going to be everywhere. And that’s key: it’s actors outside the traditional healthcare system being involved. And individuals being involved. It changes the relationships, and you now have a multi-polar system.
One fascinating area, in that regard, is how some health plans, particularly those working in Medicaid managed care and with Medicare/Medicaid dual-eligibles, are verging into the area of paying for items that aren’t clinical at all, but whose use might be able to positively influence health. Years ago, I spoke with a medical director of a health plan who talked about how she had authorized the purchase of handrails for the house of a dual-eligible member, because she had been determined to be at considerable risk for a fall. As that medical director noted, the health plan could spend $85 on handrails for Mrs. Smith, or hundreds of thousands of dollars on care for her should she suffer a devastating fall and break a hip. So it’s about the bigger picture, isn’t it?
Yes, it is about that bigger picture. And when Mrs. Smith sees her doctor, she’ll get patient-centered care. That’s exactly right. And the people putting in those sensors and other items may not be from the traditional healthcare system. And that’s a new phenomenon, we’ve never seen that before. And no matter how person-centric you are at the hospital near Mrs. Smith, she may or may not come to your hospital. There’s now a different paradigm around this. Let’s extend that idea of Mrs. Smith a bit. Let’s say she’s retired from a bank.
And we the bank might put in the handrails and the remote monitoring for her, under the aegis of her employer-sponsored health insurance plan?
It might be the employer, true. But what is happening is that some of the interactions and relationships going forward are going to be completely untethered from the traditional provider-centric healthcare system. You know, people are fixated on the 25-year-old Asian-American fitness buff from Palo Alto, who demonstrates the new app and says, of course, you want to share your running times with your friends and neighbors and post it on Instagram. And yes, those people are great, but that’s not what we’re talking about. And if the employer enables it and the health plan enables it, and maybe also the health system enables it, yes—but it might be untethered. And maybe Mrs. Smiths’ kids enable it. I talk about shared information, shared engagement, and shared accountability. And for physicians to retain trust and their unique relationship, they’re going to have to send different signals to their patients. Be willing to engage not only with your patient, but with the health plan, the employer, etc. And shared accountability will become very complicated. And the thing is, mistakes will be made, problems will occur, and people will want to blame somebody. So who’s accountable? Especially when money is involved, who’s accountable for it all?
So we’re moving away from the physician-patient interaction in the clinic as the central nexus, right? Things are going to become diffuse.
Things are becoming more diffuse now. And people will say, you’re the CEO of your life. But maybe, maybe not. When you’re in Stage 4 cancer, and can barely get out of bed, then you’re not exactly the CEO of your life. And people’s situations, preferences, and abilities, change. And it’s going to be much more fluid and diffuse, and we’ll need an adjustment period. Who owns your data, what are they going to do about it? Recently, there was an app called Sugar.IQ, and they gave it to patients. So alright, when you get large technology companies involved, how does your family doctor engage with Microsoft, or IBM? When you take away some of these barriers to direct-to-consumer, we’re in uncharted waters.
So many physicians and patient care organizations are still so focused on retaining their power and centrality, correct? And that is what you’re trying to alert them to?
Yes, that’s right. The medical profession is losing power. It doesn’t mean that it’s not important or not needed; it just means you’re losing control. Here’s an analogy: when women got the vote and Women’s Liberation came along, there’s no question that men lost control. But some would say that marriage got better. And, analogously, physicians, clinicians, patient care organizations, need to get on board with this. You’ll need much more trust. I think the doctor-patient relationship is incredibly important, particularly with large corporations getting involved in this. But if the doctor-patient relationship is going to be your ethical refuge in this, its ethical foundations are going to have to change.
Thus, we’re talking about shared information, shared engagement, and shared accountability. It’s a three-legged stool. Those will be the pillars of the new relationship. And it’s difficult, right? Because expert information is what makes a profession. And I didn’t want this to be only about technology. But in the technology realm, this is the Martin Luther moment. With the information of the printing press, you could spread the Bible for everyone to see. That’s what’s happening here, in terms of information being spread. So when your FDA-approved wearable is monitoring you, the information could be as reliable as what your physician does. And so when that kind of expert information is now available without the priest-doctor being involved, that’s going to change the relationship.
One thing that’s clear is that younger healthcare consumers have a vastly different conception of the provider-patient relationship than do their parents, and certainly than do their grandparents. They’re really looking to physician to be expert consultants, but with the consumers themselves directing their care overall.
And there are times when you absolutely can’t understand the complexities of something and you have to trust your doctor—even if you’re another doctor. But to go to your point, in order for you to be able to trust in this new environment, you have to know that the clinician trusts you, in terms engagement and accountability.
And 80 percent of the time, we’re talking about people with well-known chronic diseases.
Yes, and also, the expected diseases of aging. And when you’re dealing with the diseases of aging and with chronic disease, the technology and the economics are both changing. And physicians often underestimate what Web 2.0 is doing—it’s not just web-searching, it’s interactive, personalized, algorithmically driven information that’s not perfect, not infallible, but really pretty good, and much better than you might think. And BTW, the American College of Surgeons has, out on the web, a tool for figuring out the risks of morbidity and mortality for certain conditions. And so we have a multi-polar world. And providers are used to thinking of insurers as insurers, but they’re managing risk by managing medical care in ways they never would have done before. Meanwhile, patient care organizations are taking on financial risk as never before. And so knowledge and technology and everything, they’re all crossing boundaries. And a lot of this can be disguised by simplistic talk about patient-centeredness, etc. And beyond the hype, it’s a true paradigm shift.
And the purpose of the article is really to tell clinicians, you really need to be participatory in this. I did after all write a book called Demanding Accountability. And finally, due to federal incentives, things are moving forward in these areas.
Do you have any specific advice for CIOs and CMIOs of patient care organizations, with regard to strategy around all of this?
I’m a big fan of CIOs and CMIOs. I think the really difficult and important task they face is to look at what I’ve written here and say, how do I prepare my institution for a cultural change being driven by information? And a CMIO or CIO can look at this—they need to ask, how can I look outside my own little insulated world of healthcare, where everything reinforces that I’m at the center of the world, in the healthcare system? How can I understand what’s going on in the world and help my organization to understand some things that are culturally uncomfortable, but are ultimately vital to the success of our mission? And CMIOs especially, as physician informaticists, are unique positioned to break out of the patterns of the past, and adjust, and thrive in the future.