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Top Ten Tech Trends 2017: Moving the Learning Health System from Concept to Reality

March 22, 2017
by David Raths
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Creating a seamless interplay between research and care delivery is difficult to pull off

Last September, Jonathan Perlin, M.D., chief medical officer of Hospital Corporation of America, was asked what he would tell the new president to focus on in terms of healthcare. His response was: “It’s all about the data.”

The notion of a learning health system is defined as a system that commits to the continuous use of data as a byproduct of care for continuous learning and a virtuous cycle. Perlin pointed out that 98 percent of hospitals and 95 percent of physician practices are now computerized. “We are clicking, but we’re not yet learning,” he said. “By virtue of all that clicking, a ‘data exhaust’ is created, and in the data are answers to numerous questions,” he said. That data exhaust in the form of structured data could be fed back into the system to spur discovery, knowledge and better population health management.

The potential of big data that Perlin described is starting to become a reality at some of the leading health systems in the country and through some consortia, but as Sarah Greene, executive director of the nonprofit Health Care Systems Research Network (HCSRN), points out, using data to create a seamless interplay between research and care delivery is very hard to pull off. There are operational, technical and financial issues to work through, she says.

“Culture is a huge consideration in a couple of different ways. It is not in the day-to-day job description of front-line practitioners to be thinking about research,” she says. “So the researchers have to understand the priorities, languages and norms that drive care delivery. It is incumbent on the researchers to do that work rather than expecting the operational people to just throw open the doors. That is a paradigm shift for a lot of people.”


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Sarah Greene

The HCSRN now has 20 members including Kaiser Permanente, Catholic Health Initiatives, and Geisinger Research. In 2001 it started doing large multi-center studies with the creation of a cancer research network. The members have worked through data harmonization issues to create a “virtual data warehouse” and a common data model. But to put findings into practice, researchers have to build strong relationships with the care delivery system, Greene notes. “Those take a long time to form. You have to be in it for the long haul.”

Paul Bleicher, M.D., Ph.D., CEO of OptumLabs, a collaborative research and innovation center, says the partners his organization works with are doing research with a translation orientation. They are looking to take the results of research and apply them by creating new guidelines and measures. They are using the data to create predictive models — to identify clusters of patients and new treatment pathways. “What is becoming even bigger now and is going to have the most impact on healthcare but is just in its infancy is the use of deep learning and continuous learning methodology for identifying and predicting addressable issues,” he says.

One example of a growing learning health system is Mayo Clinic, which was OptumLabs’ first partner. “Their philosophy is they will not start or maintain a project unless they have a clinical or quality team that is ready to capture the results of that project and move it into operations,” Bleicher says. Mayo has between 20 and 30 ongoing research projects with OptumLabs.

Paul Bleicher, M.D., Ph.D.

OptumLabs also is devoting more resources to training data scientists through internships with partner organizations, including the University of California. “We believe there is a critical shortage in the United States of data scientists who understand modern machine learning and deep learning, and that it is going to set back the entire industry if we don’t do something about it,” Bleicher says. “We are intensifying specific training around healthcare data.”

Putting Patients at the Center

Harlan Krumholz, M.D., director of the Center for Outcomes Research and Evaluation at Yale-New Haven Hospital in Connecticut, argues that putting patients in control of their data and making it easier for them to participate in research could jump-start the big data/learning health system model.

“This is an essential chokepoint in our ability to make progress,” Krumholz says. Although large-denominator studies of episodes will always have some utility in giving researchers a big picture, he argues that a few key things are missing in the data we have now: one is a longitudinal perspective—most people are utilizing healthcare in a variety of places and their whole story doesn’t unfold from any single data holder’s perspective. “So even when you accumulate 200 million medical records, as some of these big companies have, they are fragmented and episodic and it is hard to tell the entire story,” he explains. The second thing we are missing is the patient perspective regarding their symptoms and experience. Studies show that what is documented in the EHR and what people actually feel are often two different things. This kind of information can be increasingly available from wearables and self-reported information. “The only way that works well is if we work in partnership with people, and say it is your data, it is going to help you, you should have agency over it, and if we can develop a trustworthy partnership, you may feel comfortable sharing it in ways that not only help you, but others, too.”

Krumholz has said that the significance of the Precision Medicine Initiative’s commitment to allowing patients to participate by sharing their data is underappreciated. Much of the attention about the rollout of the initiative, now branded as “All of Us,” was on the precision aspect, he notes. One key to PMI was the development of tools that enable patients to acquire their data from multiple providers. “Coming out of NIH [National Institutes of Health], from the president’s signature program, to say we are going to be doing research in this way is nothing short of revolutionary. The endorsement from NIH is remarkable.”

Breaking Down Organizational Barriers

One exciting thing about big data research is that it is starting to break down barriers between organizations and disciplines. For example, the 15-member Children’s Brain Tumor Tissue Consortium, run out of the Children’s Hospital of Philadelphia (CHOP), is partnering with the Pacific Pediatric Neuro-Oncology Consortium to share their data collections on rare pediatric diseases and cancers using CAVATICA, a cloud-based biomedical data analysis platform. “We have created an ecosystem to support a learning health system, not just for one institution but for all of them,” says Adam Resnick, Ph.D., director of the Center for Data Driven Discovery in Biomedicine at CHOP. “We had to build an infrastructure that reached from the biospecimen to the clinical informatics space to the molecular diagnostic space and we had to build it in a way that is radically transparent, so no single institution has any privilege to that information.”

Adam Resnick, Ph.D.

Resnick says that because pediatrics sits outside the mainstream of big data research, it is able to be more nimble in driving new practices in ways that the existing status quo community cannot. “We modeled some cultural practices for our data-driven efforts from the music industry, Uber and Airbnb,” he explains. Whereas traditionally data was seen as a commodity that you maximize through your own extraction of value, it turns out in the information age, there is great value in connectivity. “Connectivity and empowerment on behalf of a consumer — in our case a patient, a researcher, or a clinician — that in itself has tremendous value. Competing to share is something we see as a value-based approach that aligns with the moral mandate of accelerating discovery on behalf of children.”

Bringing Research, Care Closer Together

HCSRN’s Greene believes the term “learning health system” could turn some people off because it sounds too jargony. “If you ask people to get involved in improving the quality of their healthcare delivery and you call it quality improvement, that resonates with people more than saying we want you to be part of this learning health system.”

She says if there is something keeping her up at night these days, it is concern about future federal funding for this type of research in the Trump administration. But she sees two good signs: The first is that Francis Collins, M.D., Ph.D., has agreed to stay on as director of the National Institutes of Health. “He is a proponent of big data and understands the learning health system,” she says. The other encouraging sign is both the National Cancer Institute and the Agency for Healthcare Research and Quality have made stated commitments to training researchers in doing healthcare delivery-based research. Also, the Patient-Centered Outcomes Research Institute (PCORI) has provisionally agreed to put $30 million into training researchers to do learning health system-based research. “So people get it,” she says. “There is still going to be a recognized need to bring research and care closer together.” 


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Kaiser Creating Evidence-Based Complex Care Models

January 17, 2019
by David Raths, Contributing Editor
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Work aligns with recently published ‘Blueprint for Complex Care’

The National Center for Complex Health and Social Needs recently published a “Blueprint for Complex Care” to develop a collective strategy for promoting evidence-based complex care models. Recognizing that many patient issues have root causes that go beyond the medical, the Blueprint seeks to identify best practices for breaking down silos between the social care delivery system and healthcare.

Perhaps no health system has devoted as many resources to complex care as Kaiser Permanente. Its Care Management Institute, a joint endeavor between the Permanente Medical Groups and Kaiser Foundation Health Plan, has established Complex Needs as one of its national quality initiatives. It has named regional complex care leaders, created common quality measures across regions and established a complex need research arm called CORAL. (Kaiser Permanente has eight Permanente Medical Groups and regions, more than 12.2 million members, more than 22,000 physicians and 216,000 employees.)

In a Jan. 16 webinar presentation, Wendolyn Gozansky, M.D., vice president and chief quality officer, Colorado Permanente Medical Group and national leader for complex needs at the Care Management Institute, described Kaiser Permanente’s efforts and used some personal anecdotes to explain their goals.

She said Kaiser Permanenteis working on the concept of developing core competencies and tools to support a longitiudinal plan of care for patients with complex needs. “These are the folks for whom the usual care is not meeting their needs,” she said. “How do you recognize them and make sure their needs are being met?”

Gozansky gave an example from a patient she had just seen the previous wekend. This women had fallen and broken her hip. She had several chronic conditions, including significant asthma, yet she was not on an inhaled steroid.

“One concept I love from the Blueprint is that this field is about doing whatever it takes to meet the needs of the person in front of you,” she said. In speaking to the woman, she came to understand that singing in a church choir was the most important thing in her life, and the inhaler medication was making her hoarse and unable to sing.  She was fairly isolated socially except for church. “My goal was to get her rehabbed and leverage the patient-defined family that is supportive. Her goals are to sing, so we need to do what is possible to get her back to that. We have to capture that information, put it into a long-term plan of care. The goal is not to get her out of rehab but to get her singing in choir.”


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The health system has to work on care that is preference-aligned. The woman is not on a steroid inhaler but her care is preference-aligned. How does the health system assure that everyone knows they are doing the right thing?

Gozansky said the beauty of Permanente Medicine is that its setup involves an employed medical group focused on value, not volume. They can interact with health plan partners in delivery of new systems of care. “It is a virtuous cycle about value and person-centered care. This is what our complex needs team is trying to understand.”

She described the journey so far: In 2015 there were pockets of work being done across the eight Kaiser Permanente regions. In 2016 they established complex care as a national qualitiy iniative. “We knew we were not meeting these patients’ needs. We had to figure out the right way to do that.” They also realized that most of the previous research on the topic involved examples that were not in integrated systems such as Kaiser Permanente. “We had to figure it out in an integrated system,” she said.

 In 2017 they started working on cross-regional learning — for instance, taking a program from Colorado and trying it in Southern California. Then they sought to align quality measures. In 2018 they got funding to create CORAL, the complex needs research arm.  

The Care Management Institute has created a “community of practice” on complex care to break down silos within the organization and bring together research, operational and administrative executives. They also want to work with external stakeholders to make sure what they are developing is scalable, Gozansky said.

Mark Humowiecki, senior director of the National Center for Complex Health and Social Needs, also spoke during the webinar. He said one of the goals of the Blueprint was to get a clearer definition. Some people get confused about terms such as “hotspotting” and complex care, he said. He said there is a recognition that these patients’ needs are crossing traditional silos, so “there is a need to connect care for the individual but also at the system level.”

The goal, he added, is to create a complex care ecosystem by developing in each community system-level connections between social care delivery and healthcare, which in the past have operated too independently.  The five principles are that complex care is person-centered, equitable, team-based, cross-sector and data-driven. One of the Blueprint’s recommendations is to enhance and promote integrated cross-sector data infrastructures.



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NIH’s All of Us Program Teams with Fitbit for Data Collection

January 16, 2019
by Heather Landi, Associate Editor
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The All of Us Research Program, part of the National Institutes of Health (NIH), has launched the Fitbit Bring-Your-Own-Device (BYOD) project. Now, in addition to providing health information through surveys, electronic health records, and bio-samples, participants can choose to share data from their Fitbit accounts to help researchers make discoveries.

According to All of Us research program officials, the project is a key step for the program in integrating digital health technologies for data collection.

The All of Us Research Program, established by the White House in 2015, aims to advance precision medicine by studying the health data of 1 million diverse Americans over the next five years. One aim of the project is to include groups that have been historically underrepresented in research. As of September 2018, more than 110,000 people have registered with the program to begin the participant journey, and more than 60,000 have completed all elements of the core protocol.

The participants are sharing different types of information, including through surveys, access to their electronic health records and blood and urine samples. These data, stripped of obvious identifiers, will be accessible to researchers, whose findings may lead to more tailored treatments and prevention strategies in the future, according to program officials.

Digital health technologies, like mobile apps and wearable devices, can gather data outside of a hospital or clinic. This data includes information about physical activity, sleep, weight, heart rate, nutrition, and water intake, which can give researchers a more complete picture of participants’ health.” The All of Us Research Program is now gathering this data in addition to surveys, electronic health record information, physical measurements, and blood and urine samples, working to make the All of Us resource one of the largest and most diverse data sets of its kind for health research,” NIH officials said.

“Collecting real-world, real-time data through digital technologies will become a fundamental part of the program,” Eric Dishman, director of the All of Us Research Program, said in a statement. “This information, in combination with many other data types, will give us an unprecedented ability to better understand the impact of lifestyle and environment on health outcomes and, ultimately, develop better strategies for keeping people healthy in a very precise, individualized way.”

All of Us participants with any Fitbit device who wish to share Fitbit data with the program may log on to the All of Us participant portal at and visit the Sync Apps & Devices tab. Participants without Fitbit devices may also take part if they choose, by creating a free Fitbit account online and manually adding information to share with the program.

All of Us is developing additional plans to incorporate digital health technologies. A second project with Fitbit is expected to launch later in the year, NIH officials said, and this project will include providing devices to a limited number of All of Us participants who will be randomly invited to take part, to enable them to share wearable data with the program.

The All of Us research program plans to add connections to other devices and apps in the future to further expand data collection efforts and engage participants in new ways.

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NorthShore to Lead “Largest Primary Care-Based Genomics Program in U.S.”

January 14, 2019
by Rajiv Leventhal, Managing Editor
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The Chicago-based NorthShore University HealthSystem and genomics technology company Color are partnering on a new initiative that will aim to deliver the power of genomics to routine primary care at population scale.

Known as "DNA10K," the initiative will engage more than 10,000 patients and will be the largest known primary care-based genomics program in the U.S., according to officials who made an announcement last week.

The approach will build on NorthShore's years of experience in genomics and actionable electronic medical records (EMR) information, while providing access to Color's clinical-grade genetic testing and whole genome sequencing to inform patients about their risk for certain hereditary conditions, according to company executives.

“The knowledge will help patients learn about their genetic makeup, including risk factors for certain disease types such as common hereditary cancers and heart diseases. This insight will help NorthShore personalize care for each patient to support improved outcomes, prevention and overall health,” officials noted.

The announcement comes on the heels of a recent pilot between NorthShore and Color that looked to unlock the benefits of genetic information in routine care.

As officials explained, in less than two months, more than 1,000 patients signed up for the Color population health program as a part of their primary care visit, an adoption rate of more than 40 percent of those eligible and significantly beating expectations of the pilot program. “This is a strong indicator of patients' interest in understanding genetic factors that can influence health and the opportunity to work with NorthShore care providers to make more informed treatment or prevention decisions,” they attested.

Overall, the DNA10K initiative supports NorthShore's efforts to improve patients' health outcomes at a population level, with genomics as a foundation for informing individualized healthcare.

Patients who take advantage of the "DNA10K" offering will provide a blood sample, which is then analyzed in Color's CLIA-certified, CAP-accredited lab, and results are returned to healthcare providers and their patients. In addition to their NorthShore primary care provider, patients will also have access to board-certified genetic counselors and clinical pharmacists from Color and NorthShore, officials explained.

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