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One Industry Leader Urges a Shift from “Patient-Centered” Care to “Collaborative Health”

August 4, 2017
by Mark Hagland
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Michael Millenson explains why “collaborative health” is a better frame than “patient-centered care”

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.


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AMIA, AHIMA Call for HIPAA Modernization to Support Patient Access

December 7, 2018
by Heather Landi, Associate Editor
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Modernization of the 22-year-old Health Insurance Portability and Accountability Act (HIPAA) would improve patients’ access to their health information and protect their health data in a burgeoning app ecosystem, according to two leading health IT industry groups.

During a briefing on Capitol Hill Wednesday, leaders with the American Medical Informatics Association (AMIA) and the American Health Information Management Association (AHIMA), health informatics and health information management experts discussing how federal policies are impacting patients’ ability to access and leverage their health data.

While other industries have advanced forward with digital technology and have improved individual’s access to information, and the ability to integrate and use information, such as booking travel and finding information about prices and products, healthcare has lagged. Healthcare has not been able to create a comparable patient-centric system, AMIA and AHIMA leaders attested.

“Congress has long prioritized patients’ right to access their data as a key lever to improve care, enable research, and empower patients to live healthy lifestyles,” AMIA president and CEO Douglas B. Fridsma, M.D., Ph.D., said in a statement. “But enacting these policies into regulations and translating these regulations to practice has proven more difficult than Congress imagined.”

“AHIMA’s members are most aware of patient challenges in accessing their data as they operationalize the process for access across the healthcare landscape,” AHIMA CEO Wylecia Wiggs Harris, Ph.D. said. “The language in HIPAA complicates these efforts in an electronic world.”

AMIA and AHIMA recommend that policymakers modernize HIPAA by either establishing a new term, “Health Data Set,” which includes all clinical, biomedical, and claims data maintained by a Covered Entity or Business Associate, or by revising the existing HIPAA “Designated Record Set” definition and require Certified Health IT to provide the amended DRS to patients electronically in a way that enables them to use and reuse their data.

According to AMIA and AHIMA, a new definition for “Health Data Set” would support individual HIPAA right of access and guide the future development of ONC’s Certification Program so individuals could view, download, or transmit to a third party this information electronically and access this information via application programming interface. Alternatively, a revision of the current DRS definition would provide greater clarity and predictability for providers and patients.

The groups also noted that a growing number of mHealth and health social media applications that generate, store, and use health data require attention as part of a broader conversation regarding consumer data privacy.

Congress should “extend the HIPAA individual right of access and amendment to non-HIPAA Covered Entities that manage individual health data, such as mHealth and health social media applications, the two groups said. The goal is uniformity of data access policy, regardless of covered entity, business associate, or other commercial status, the group leaders said.

Beyond HIPAA, during the briefing Wednesday, panelists discussed the success of efforts to share clinical notes with patients during visits, including the successful OpenNotes initiative, and recommended that federal officials look for ways to encourage more providers to share notes with patients through federal policies, such as Medicare and Medicaid payment programs.

“More than two decades after Congress declared access a right guaranteed by law, patients continue to face barriers,” Thomas Payne, M.D., Medical Director, IT Services, UW Medicine, said in a statement. “We need a focused look at both the technical as well as social barriers.”

What’s more, AMIA and AHIMA recommended federal regulators clarify existing regulatory guidance related to third-party legal requests, such as those by attorneys that seek information without appropriate patient-direction.

“HIM professionals continue to struggle with the existing Office for Civil Rights guidance that enables third-party attorneys to request a patient’s PHI,” Harris stated. “We recognize there are necessary circumstances in which a patient has the right and need to direct their health information to an attorney. However, AHIMA members increasingly face instances in which an attorney forwards a request for PHI on behalf of the patient but lacks the information required to validate the identity of the patient. As a result, the HIM professional is challenged as to whether to treat it as an authorization or patient access request, which has HIPAA enforcement implications

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Health Systems Work with Epic on Electronic Patient-Reported Outcomes for Oncology

November 18, 2018
by David Raths, Contributing Editor
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With eSyM app, patients will provide feedback to their cancer care team via the EHR

Six U.S. healthcare systems are sharing a $9 million grant to research introducing electronic patient-reported outcomes (ePROs) into the routine practice of oncology providers to improve symptom management and to decrease hospitalizations.

The National Cancer Institute, in association with the Beau Biden Cancer Moonshot Initiative, recently announced the funding of the collaboration, the SIMPRO (Symptom Management IMplementation of Patient Reported Outcomes in Oncology) Research Center. The SIMPRO team will work with Epic, the EHR system used by all six participating institutions, which are New Hampshire-based Dartmouth-Hitchcock, Dana-Farber/Brigham and Women’s Cancer Center in Boston, Baptist Memorial Medical Center in Memphis, Lifespan Cancer Institute in Rhode Island, West Virginia University Cancer Institute, and Maine Medical Center in Portland.

SIMPRO will develop, implement, and evaluate an ePRO reporting and management system through an app called eSyM. Patients’ smart devices will enable a secure connection to their cancer care team via the EHR, and facilitate symptom tracking following cancer surgery or chemotherapy. The study will test whether monitoring the symptoms patients experience and providing coaching on how to manage them can decrease the need for hospitalizations and emergency room visits.

“The opportunity to partner directly with Epic and their resources, to build these tools into our electronic health record, means in the short-term the research is more likely to bear fruit “and in the long-term that successful strategies can be disseminated around the country.” said Dartmouth-Hitchcock Chief Health Information Officer Peter Solberg, M.D., in a prepared statement,

After development and pilot testing, eSyM will be fully integrated into the EHR at each participating center, allowing for direct communication and real-time updates for clinicians who will have access to a dashboard of patients’ symptoms to prioritize outreach efforts and coaching.

The SIMPRO investigators will conduct a randomized trial to evaluate implementation of eSyM from a patient, clinician and health system perspective. Across all study phases, the implementation, adoption, acceptance, and adaptation of the ePRO system will be critically evaluated to promote better delivery of cancer care.



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UnitedHealthcare to Award Members with Apple Watches for Meeting Daily Walking Goals

November 16, 2018
by Rajiv Leventhal, Managing Editor
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UnitedHealthcare Motion, an employer-sponsored wellness program, is telling its participants they can get a free Apple Watch if they meet the insurer’s daily walking goals over a six-month period.

Participants can start receiving and using the Apple Watch (initially paying only tax and shipping) and then apply program earnings toward the purchase price of the device. Participants may be able to own, with a zero balance, an Apple Watch after approximately six months of meeting daily walking goals, the insurer announced this week. If members already own an Apple Watch, they can use the one they have.

UnitedHealthcare Motion, since 2015, has been providing eligible plan participants access to wearables that may help them earn over $1,000 per year by meeting certain daily walking goals. Since the program’s inception, participants have collectively walked more than 235 billion steps and earned nearly $38 million in rewards, according to officials.

Program participants can now use the Apple Watch to see how they are tracking against the program’s three daily goals—frequency, intensity, and tenacity—helping integrate physical activity and engagement with their health plan.

Indeed, UnitedHealthcare Motion is available to employers with self-funded and fully insured health plans across the country. The program may enable employees to earn up to $4 per day in financial incentives based on achieving FIT goals:

  • Frequency: complete 500 steps within seven minutes six times per day, at least an hour apart;
  • Intensity: complete 3,000 steps within 30 minutes; and
  • Tenacity: complete 10,000 total steps each day.

“This program is part of UnitedHealthcare’s broader effort to provide people with wearables, digital resources and financial incentives that help them take charge of their health, better manage chronic conditions and make care more affordable,” officials noted.

Indeed, these efforts build on UnitedHealthcare’s existing consumer offerings, powered by Rally, which have enabled people to earn more than $1 billion in health-related financial incentives since 2016, the insurer stated.

Among all eligible UnitedHealthcare Motion participants, more than 45 percent participated in the program—compared to some other employer-sponsored disease-management programs that report 5 percent engagement rates.

Among people who registered their device, 59 percent stayed active for at least six months, a rate higher than gym memberships (29 percent). Current program participants walk an average of nearly 12,000 steps, or more than twice the approximately 5,200 steps logged by the average American adult, officials said.

The program has been particularly appealing to eligible participants with chronic conditions. People with such a diagnosis are 20 percent more likely to participate, and people who have diabetes are 40 percent more likely to participate than those who do not, according to the insurer.

As CNBC’s Christina Farr speculated in a story that broke the day before the UnitedHealthcare announcement, “The integration with UnitedHealthcare, which is the largest U.S. healthcare company, could mean a boost in sales of the Apple Watch as more people are able to buy it at an affordable price.”

It was reported last year that another major health insurer, Aetna, which already offers the Apple Watch to its employees as part of a wellness program, has also been in talks with Apple about pushing the wearable device to the health insurer’s members, according to a report in CNBC.

About a month ago, UnitedHealth Group’s CEO said on an earnings call that the insurer would be unveiling a “fully integrated and fully portable individual health record” by the end of next year, with the Rally digital platform serving as the base for development. 

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