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UCHealth’s OpenNotes Journey: From a Few Docs to Enterprise-Wide Acceptance

March 16, 2017
by Rajiv Leventhal
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Now, the health system has 350 clinics, seven hospitals and 21 EDs on board in an “opt-out” model

Although the OpenNotes initiative—designed to give patients access and ability to read visit notes online—has now reached 12 million patients in the U.S. alone, there have been challenges and pushback along the way, dating back to the beginning of the movement.

In fact, says CT Lin, M.D., chief medical information officer (CMIO) at UCHealth, a 7-hospital, 400-clinic system in the Rocky Mountain region, the “original” OpenNotes was actually called “SPPARRO,” or “Systems Providing Patients Access to Records Online.” Although Lin admits he is no fan of that acronym, he says SPARRO was a system that spurred patient engagement progress. The original pilot experience in 2001 at UCHealth specifically included 100 patients in one heart failure practice with its associated seven physicians. “And we had trouble in even getting those seven to sign up,” says Lin.

At the time, Lin says that providing patients access to their notes online was a research interest of himself and one of his colleagues in internal medicine, and was also backed by the CIO of the hospital at the time “who had a real drive to be transparent.” Lin asks, “Why is it that the medical record so opaque to the patient? Something like 0.5 percent of all patients actually request their records, because we make it so hard. You have to pay $25 or maybe [the record] is in some basement of a building downtown, and it takes a month for you to actually get that record.  No wonder most patients don’t take that action and go through the activation of requesting their records,” he says. He adds, “It has [historically] been the view of healthcare that notations made by physicians are for themselves or for other doctors. It’s too dangerous for the patients, clearly, to know anything beyond what pill to take. This paternalistic view has existed for a long time.”

As such, it was no surprise that Lin, a clear advocate of OpenNotes, got significant pushback from colleagues and medical leadership in the early going. He says that many people thought it was a terrible idea; one clinical leader said he hoped that Lin’s organization had a malpractice fund large enough to handle all the impending lawsuits; others told him that it would be too much work for nurses to handle all of the incoming messaging and calls, and that they would have to be paid for four extra hours per week. “So we funded this money for the extra staff, but in the end, the extra work turned out to be all of five minutes total for the year. And personally, I rarely got a call about any issues,” Lin says. In fact, he adds, nurses would say that when patients in this program called, rather than asking about the result of a test, since they have read the doctors’ notes already, they began to ask much more intelligent questions about that test and what impact it had.

But still, it wasn’t easy for Lin to convince leadership in the benefits of this initiative. He says that he would go into meetings with randomized controlled data that proved that opening the record caused no issues, but even then, physician executives looked at him as if he “were growing a second head.” Lin says, “I showed them the data, but they countered by saying that cardiology patients are a ‘simple’ sample and that it would never work for others, such as psychiatric patients. I walked out of that leadership meeting with a ‘thanks but no thanks’ response,” Lin says.

But then as more time went by, and the country started to catch onto the benefits, suddenly “OpenNotes” turned into a movement. Indeed, a well-publicized project at Boston’s Beth Israel Deaconess Medical Center (BIDMC), Danville, Penn.-based Geisinger Health System, and Seattle-based Harborview Medical Center, revealed that after the sharing of notes between clinicians and patients, patients reported feeling more in control of their health, being better prepared for their visits, and several other benefits. What’s more, doctors saw little or no impact on their workflows. At the end of that 12-month pilot, 99 percent of patients wanted to continue sharing visit notes and no doctor asked for the notes to be turned off.

Just like that, medical leadership at UCHealth started to become believers, Lin says. “We did seven more pilots in 2014, and in 2016 we pulled the Band-Aid off and set a firm date to go system-wide. We now have 350 clinics, seven hospitals and 21 EDs that all have OpenNotes [implemented] at this point. But it was a long cultural climb; one in which we had to convince medical leadership one-by-one,” says Lin.

With trial data of 30,000 patients under Lin’s belt in 2014, and the culture in the country having changed, Lin told leadership at UCHealth that as part of the electronic health record (EHR) system version upgrade in 2016, everyone enterprise-wide would be part of OpenNotes. “I gave them a choice of going in early or waiting for the system to go live. It had to be one or the other,” he says. “So it was an opt-out model, meaning for all of the 3,000 physicians at our enterprise, as they wrote their notes, the default was that it would be shared with patients. If they wanted to opt out, they would have to push the button to opt-out for each note they wrote. And because of that, our share rate with patients is 99 percent; we have less than a 1 percent of opt-out rate,” Lin says. He adds that the only exception to that is psychiatry, as most of the organization’s psychiatry clinics do not make their notes available to patients, although two of UCHealth’s academic psychiatric practices are now part of OpenNotes.

Still, skeptics who might not be heavily involved in OpenNotes typically give a number of concerns, which include: a greater workload on clinicians who have to deal with more questions from patients now that they are reading their notes actively; possible offense being taken by patients in regards to what doctors write in their notes; and as a result, if clinicians would be as “true” in their documentation as they would be if patients were not reading them.

But Lin says that in the 2014 trials, there were essentially zero complaints and definitely no lawsuits, and this was despite the fact that he would visit with his physicians on a monthly basis to get updates on how it was going. As far as patients taking offense, UCHealth actually put together a one-page whitepaper for clinicians that gave suggestions for how they can write the same note, but in a “nicer” manner. “I have seen examples of physicians writing bad [things] in the medical record about their patients, but you know, patients have had legal access to these records legally since 1970, so hopefully those behaviors are past us.” Lin gave an example that if the patient is obese, for instance, if the clinician links it to why it’s important to lose weight, maybe that patient would be offended, but he says that patients have actually reported back that they want the doctor to be upfront with them in a black-and-white manner. “When it comes down it, anxiety around patients being offended really is not too accurate,” he says.

Going forward, Lin says that he wants to get to a point in which data interchange can be done for patients. “Right now, the record is static. We are showing them PDFs or text documents about what the physicians wrote, but I would love to get to the point where we could take the FHIR (Fast Healthcare Interoperability Resources) standard to allow patients to take their coded medication lists, allergy lists, and problem lists, and be able to share them with another trusted app—maybe a Walgreens app where they could do medication renewals by pressing a button,” he says.

He adds that one of his teams is working on taking the patient portal data, and allowing patients to export that to the state insurance exchange. The idea, says Lin, would be to have patients show payers the claims that they needed this year and from that, they can be presented with options for what is the lowest cost plan that covers all of those claims, of all the plans available. “But if we are still debating if it’s ok to share, and if we’re still debating privacy, we won’t get past where we are now and we won’t be able to innovate on top of it. That’s where I want to get to,” Lin says.



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Consumer Health Tech Startup Ciitizen Raises $17M

January 16, 2019
by David Raths, Contributing Editor
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Building a platform to help patients collect, organize and share their medical records digitally

Ciitizen, a California-based company working to build a platform to help patients collect, organize and share their medical records digitally, has closed $17 million in new funding in a round led by Andreessen Horowitz and that included Section 32 and Verily.

The Redwood City, Calif.-based company said it would use the proceeds to accelerate platform development and expand commercial operations. The company received a Series A financing round of $3 million led by Andreessen Horowitz in July 2018. As part of the new financing, Vijay Pande, general partner of Andreessen Horowitz's Bio fund, will join the Ciitizen board of directors. Michael Pellini, managing partner at Section 32, and Andy Harrison, head of business and corporate development at Verily, will join the board as observers.

Ciitizen’s co-founders are Anil Sethi, Premal Shah, and Brian Carlsen. CEO Anil Sethi’s last company, Gliimpse, was acquired by Apple. Carlsen was formerly special projects lead at Apple, and serves as director of clinical informatics at Ciitizen. Deven McGraw, who has deep experience in HIPAA and medical data sharing, and was formerly the head of privacy at the U.S. Department of Health and Human Services, also works for Ciitizen.

"We are aggressively hiring to support release of products in partnership with select healthcare stakeholders that will immediately benefit patients—all driven by obtaining and organizing a patient's health data," said Premal Shah, COO, in a prepared statement. "Contrary to what is happening today, we want to facilitate patients gaining maximum direct benefit from what is rightfully theirs: their personal healthcare data."

"We are aggressively hiring to support release of products in partnership with select healthcare stakeholders that will immediately benefit patients—all driven by obtaining and organizing a patient's health data," said Premal Shah, COO and Co-Founder of Ciitizen. "Contrary to what is happening today, we want to facilitate patients gaining maximum direct benefit from what is rightfully theirs: their personal healthcare data."

Ciitizen also has initiated a weekly blog, The Voice of Ciitizens, that offers opinions from healthcare thought leaders on ways to address some of healthcare's most pressing challenges, including patient empowerment with their data.



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Survey: Consumers Want to Manage Healthcare Benefits, Costs via Smartphone

January 15, 2019
by Heather Landi, Associate Editor
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There is a growing “mobile first” trend, as consumers increasingly want to preform everyday tasks and utilize services on their smartphones, and this trend is moving into healthcare. A recent consumer survey indicates that consumers want more transparency, convenience and control of their own healthcare, particularly through mobile access, and, this demand could be influencing their healthcare decisions.

A survey by Metova, a provider of mobile, connected care, connected home and Internet of Things (IoT) solutions, found that 80 percent of consumers would be more likely to visit a doctor or seek treatment if they could see the exact out-of-pocket cost on their smartphone. And, three-quarters of consumers are interested in viewing and managing their health care benefits using a smartphone.

Metova surveyed 1,000 consumers who have healthcare to gauge their understanding of their health benefits, and to find if technology can improve their experience.

Nearly half of consumers have avoided going to the doctor or seeking treatment due to uncertainty around their benefits, according to the survey. Looking at the role of technology, nine out of 10 consumers said they would like an app that provides notification when a doctor sends a prescription along with pharmacy location and pickup time. In addition, 60 percent would like to purchase eyeglasses or contact lenses using their smartphone.

“It’s impressive to see how having a clear understanding of out-of-pocket cost on a smartphone would have a powerful positive effect on consumers’ deciding to seek treatment or even visit a doctor,” Jonathan Sasse, CMO at Metova, said in a statement. “Our sentiment surveys overwhelmingly demonstrate that the new connected consumer is ready and wanting to manage a wide range of facets of everyday services all via their smartphone, and that a person will choose one business, or even a doctor or insurance providers over another based on this mobile experience.”

Ken Erickson, CEO at Bridge Purchasing Solutions, said in a statement, “The healthcare industry is overdue for disruption. Consumers want more transparency, convenience, and control of their own healthcare.”

Related Insights For: Patient Engagement


One Thought-Leader’s Look at the New Social Contract in Medicine and Healthcare

January 7, 2019
by Mark Hagland, Editor-in-Chief
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Healthcare thought-leader Michael Millenson shares his perspectives on the emerging new social contract around medical care and healthcare—in a time of accelerating technology disruption

Last week, Michael Millenson, president of Health Quality Advisors LLC, and an associate professor of medicine at Northwestern University’s Feinberg School of Medicine, authored a thought-piece in the online publication STAT, entitled, “Google is quietly infiltrating medicine—but what rules will it play by?” Millenson looked at the emerging landscape in healthcare around the accelerating participation of healthcare consumers in using web search, consumer-facing apps, and other tools, to help them educate themselves about personal health and healthcare delivery issues, as well as the emergence of a number of corporations, including Google, Amazon, and Apple, as disruptors in the healthcare world—both as innovators in technology, as well as, increasingly, players in the care management and care delivery arenas.

“If ‘data is the new oil,’ as the internet meme has it, Google and its Big Tech brethren could become the new OPEC,” Millenson wrote on January 3. “Search is only the start for Google and its parent company, Alphabet. Their involvement in health care can continue through a doctor’s diagnosis and even into monitoring a patient’s chronic condition for, essentially, forever.”

Meanwhile, Millenson wrote, “Suppose you’re worried that you might have diabetes. Googling ‘diabetes’ brings up not just links but also a boxed summary of relevant information curated by the Mayo Clinic and other Google partners. Google recently deployed an app enabled with artificial intelligence for remote professionals to use that can all but confirm diabetes-related retinopathy, a leading cause of blindness. Diabetes is also a diagnosis your doctor might have predicted using more Google AI applied to the electronic health record. Meanwhile, a Google joint venture called Onduo recently announced a partnership to allow a major pharmacy chain to use its “virtual diabetes clinic” to coach patients on managing their disease. And, of course, at home you can get daily diabetes reminders from your Google Assistant.”

And, in some cases, he added, “[Y]our doctor could actually be Dr. Google. The brick-and-mortar Cityblock clinic, whose first site opened in Brooklyn, N.Y., earlier this year, is an Alphabet spinoff. It promises a ‘personalized health system’ experience for low-income patients.”

And with Google hiring the former chief executives of both the Geisinger Health system and the Cleveland Clinic, more and more interesting developments are certain to be at hand.

Michael Millenson

And all of this, Millenson noted, is prompting some in the industry to ask what the implications are of these developments for the social contracts that have long anchored physician-patient/clinician-patient, and patient care organization-patient relationships and interactions. In that context, he spoke with Healthcare Innovation Editor-in-Chief Mark Hagland, following the publication of his STAT commentary, to discuss the implications of some of those current trends, for the future of patient care delivery. Below are excerpts from that interview.

There are so many developments taking place right now involving what might be called “interspecies” business combinations—payers and providers, payers and retail pharmacy companies, employers and providers, and on and on. Do you see some potential dangers in the uncharted territory that’s emerging in healthcare, because of such combinations?

What I was trying to sound as a cautionary note, not an alarm, but a cautionary note, was that, when barriers are breached in terms of definitions, there are new challenges to long-established ways that we do things. We all like to talk about disruption, but there are downsides. And those downsides need to be confronted squarely. And what I was trying to propose in my commentary was a practical ethical framework for dealing with downsides—not a mission statement, or whatever, but practical thoughts. If you have a commitment to accountability and shared responsibility, it brings up issues. Just because you believe you’re committed to patient engagement or lowering healthcare costs, or whatever noble goals you espouse, particularly if you’re working for a not-for-profit entity, or even a for-profit, personal and corporate interests can conflict with noble goals.

And even as all these kinds of partnerships can be wonderful, we also realize we need new ways of dealing with potential negative side effects. No hospitals that merge ever say, thank God we can get rid of the price pressure from insurance companies! And it’s not that individuals making statements about mergers are deliberately telling untruths, but they sometimes make statements that may not be in the best interests of patients.

Healthcare informatics arose from people who were in the HC field, who wanted to apply the benefits of informatics knowledge to improving care, lowering costs, and other problems. That’s a different set of assumptions from when you take people whose expertise is in manipulating data and information, and put them into healthcare. There are cultural issues there. People from within HC tend to say, there are certain problems, and let’s look for solutions.

But people outside healthcare sometimes have the tendency to say, we have this wonderful tool; look at all the ways we can solve your problems.

Looking at the entry into the healthcare delivery process of disruptors like Google, simply because of the near-universality now of web search as a consumer activity in healthcare—will consumers simply start self-diagnosing off the web now?

It’s one thing to look at Google as a search engine. It’s another to look at the issue of Google as an element in care delivery. The issue of “Dr. Google” is a significant one. I wrote an article recently called, “Beyond Dr. Google.” What happens if you’re using the Babylon Symptom Checker with AI? What happens if you’re looking at a mole? Because they’ll have a legal disclaimer. But we’re looking at an entire paradigm shift around how we interact with doctors. Years ago, I said the Information Age is to medicine as the Protestant Reformation was to the Catholic Church. It changed the people’s relationships to the priests; the Church didn’t go out of business, but it had to change. Once the laity could read the Bible, the role of the priests had to change. And I think that the role of physicians as holders of knowledge, has to change. They still have specialized knowledge; but the conversation has to change, and the tone has to change.

What I’m concerned about is when an organization like Google, Amazon, or Apple, starts partnering with physicians, what happens? When Google, Amazon or Apple, starts being a partner to help you with your diabetes, are they helping you have a better conversation? Or are they starting to use gathered information to try to cause behavior change, to manipulate you? And there’s a fine line between doing this for your own good, or because I want you to change?

And then there’s the accountable care issue—when you have attributed patients, and it’s in your financial interest now to collect and use social-determinants-of-health data and other forms of data, as well as apps and tools, to try to motivate your patients towards participating in the enhancement of their health status.

Exactly—now, there’s also a profit motive. I wrote an article about the secret use of the social determinants of health, for care management—and for profit, on the part of vendors that are putting data into algorithms and selling those solutions. LexisNexis found a correlation between someone in the household having completed some kind of professional certification, anything from a plumber’s license to a PhD—with medication compliance and adherence. The point is, you get companies that use information about my life, as raw data for analytics, that are meant to influence my behavior. We need a different kind of safeguard doesn’t go awry. And I’m not saying that what they’re doing might not be wonderful and disruptive in a good way, but nothing turns out as promised, whether Brexit or Google.

The social contract in healthcare, particularly between providers and patients, especially that between physicians and patients—what might that look like, or need to look like, in the coming years?

I see collaborative health as the new social contract. I’m not sure that that patriarchal, hierarchical relationship has changed as much as we might be thinking. I remember writing things 30 years ago that everything would change, and the hierarchies would be totally gone. They haven’t disappeared, though. Your grandmother was probably just grateful to see a doctor. And there are still a lot of people in the country who are still grateful just to see a doctor.

So part of that issue involves socioeconomic class, of course?

Yes, absolutely. That said, I also absolutely agree that a new social contract is going to center around collaborative health. And an explicit one is needed. There’s a lot of talk about that, around Google, Facebook, Alexa. But the medical element is different. When organizations that have tremendous data analytics capabilities, are applying those to the problems of individual patients, that gives us both the potential for unprecedented breakthroughs in patient care, and for the unprecedented ability to manipulate people. The fact that I know everything about your Google searches, your purchasing and eating patterns, and I’m tracing your driving patterns—that can help me improve your health, but also control your life, and manipulate people. And even if the decisions are to your benefit, a social contract demands shared engagement and shared accountability, because that’s the social contract that medicine needs, to retain its soul—even if that doesn’t help increase the value of the IPO or the price-earnings ratio, or the amount of money you get back from meeting your obligations under an ACO contract.

How do you see physicians and other clinicians adapting to this new world?

I think the social contract is even more important, because the power of the individual doctor is often decreasing now. If more and more doctors will be employed, and operating under stricter rules of accountability, that’s good for patients, but the balance between accountability and autonomy is a balance we’ve got to find. And we should welcome Amazon, Apple, and Google—they have an incredible potential to disrupt HC for the better; but the individual doctor, just like the individual patient, is going to be powerless to set a new social contract on their own. That’s why we need a social contract that encompasses clinicians, patients, patient care organizations, payers, pharmaceuticals, and everyone. It may be to my benefit that my doctor is using an app to track population health issues, but with the blurring of lines between different types of organizations, things get complex. Information is power, and the information we’re gathering is extraordinarily powerful, and good things can go awry. So frankly, I see this new social contract as a protection for physicians, and as something that will ensure that the “therapeutic alliance” that doctors like to talk about, will remain strong, even as other boundaries dissolve. And whether my doctor is employed by an insurance company, a hospital, or is a solo practitioner, it should make no difference to certain kinds of relationships.



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