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At WoHIT, a Finnish HIT Leader Details a Groundbreaking Nationwide Health Data Initiative

November 27, 2016
by Mark Hagland
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Finnish health data expert Jaana Sinipuro talks about a group of initiatives in Finland set to break new ground on healthcare—and health

Healthcare IT innovation is plunging ahead in the Nordic countries—the Scandinavian countries of Norway, Sweden, Denmark, and Iceland, plus Finland—with Nordic HIT innovation leading Europe and the world, in many areas, including big data around population health, linking genomic research and patient care, and creating nationwide and region-wide data-sharing.

In an article entitled “Finnish Data Design—a New Era?” published in January of this year, Jukka Vahti, a communications specialist at SITRA, the Finnish Innovation Fund, a Finnish public organization sponsored by the Finnish parliament that sponsors innovative work in social welfare services, education, and technological development, wrote that “Rapidly progressing digitization is shaking the foundations of our society in more ways than one: while the nature of work is transforming and services are playing a more central role in the production structure of society, expectations and needs related to public-sector services are changing. Digitization is also opening up countless new opportunities for designing and providing social welfare and healthcare services in a completely new way. In late 2015,” Vahti wrote, “SITRA launched a new set of projects preparing for the establishment of a body focused on gathering and coordinating well-being data. Known as Isaacus, the service is a digital health hub aimed at responding to the challenges posed to society by rapid change.” Indeed, he wrote, placing health IT innovation work in Finland into the context of a decades-long societal push for design innovation there, “Digitization could usher in the dawn of a new golden age of Finnish design. This new Finnish design is about using our existing, abundant data reserves and supporting the creation of ecosystems around them. Data is a natural resource. By using it, and in particular by drawing together data from various sources, we can create new Finnish classics that could become internationally renowned export assets.”

Indeed, it is in that context—a society-wide concern for enhancing the quality of life for all Finns—that SITRA has become involved in an innovative initiative to harness data nationwide to improve the health of everyone in Finland. As Vahti wrote in a Nov. 15 article entitled “The Finns in Barcelona: This is why you should be interested in #HealthDataDesign,” a large delegation of Finnish healthcare IT leaders headed for Barcelona this month to participate in the World of Health IT (WoHIT) Conference, sponsored by the Chicago-based Healthcare Information and Management Systems Society (HIMSS), with the intent to share with fellow Nordic and European healthcare IT leaders ideas around how to enhance health across countries and regions through the leveraging of data and IT.

And one of the Finnish healthcare IT leaders helping to lead a fascinating initiative is Jaana Sinipuro, whose title is leading specialist in the Digital Health Hub at SITRA. Sinipuro is helping to lead the architecting of what is known as “Isaacus—the Digital Health Hub.” The Isaacus initiative is preparing to collect health status and health data from across all relevant databases in Finland—not only those from the provider sector of Finnish healthcare, but also from social welfare agencies and other sources—in order to improve the capabilities of researchers to uncover social welfare and health status patterns across Finnish society, and therefore support the development of new policies and programs to address issues such as chronic disease and the social determinants of health in that country.


Jaana Sinipuro

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Sinipuro sat down during WoHIT with Healthcare Informatics Editor-in-Chief Mark Hagland to discuss the Isaacus initiative and the prospects for leveraging big data to make huge leaps in social welfare planning in Finland. Below are excerpts from that interview.

Please share with us a bit about the background and origins of this project. How did all of this start?

This is a project that started two years ago. SITRA is an organization that is owned by the Finnish Parliament. We run on our own capital. We call ourselves a “think and do tank.” We’re a self-sustaining agency, meaning that we’re responsible for supporting ourselves financially. We work very closely with different ministries. Meanwhile, you’ve probably heard of the Gartner concept of the digital business platform; what we’re trying to do in Finland is to create a data broker with access to all data sources—care data, social care sources—we are trying to put together social care and healthcare data—that’s unique. So this will encompass people, information, and things: together, we will gather and produce intelligence, and above that, we will be working to improve ecosystems [of data and information].

One major element in all this is the fundamental realization that you need to have good data to have a good patient relationship, and then you need to integrate your IoT [Internet of things] data [with data from within patient care organizations, in order to be effective. So we’re working closely with Tekes, the Finnish funding agency. They work primarily with vendors and developers, and SITRA is working with the public sector—government and agencies and caregivers. But we’ve created a unique collaboration that we’re pursuing with them.

And what you’re working towards, with this Isaacus initiative, is a nationwide data initiative?

What it really is, is a national data protocol, which should be up and running in 2018. Estonia already has a national data protocol. And we’re using the same protocol in Finland. Why Finland, and why now? We believe that there are several elements that are positioning Finland optimally for this work right now. First, we have a relatively small population, of a little over 5 million people nationwide, and it is a population with an isolated gene pool. Second, we already have a biobank law that was passed in Finland in 2012 and went into effect in 2013 [read about that law, the Suomen Biopankit, here]. Third, all Finns already have a national personal ID, which makes data collection easier. And fourth, we already have exceptionally extensive, high-quality data, being collected, and available to researchers, across numerous fields of endeavor, now, in Finland.

And what is triggering the activity at this moment?

Generally speaking, there’s a public attitude that has emerged from the citizens of our country that is support this. In addition, a new law known as the “Act on the Safe Use of Health and Social Data,” goes into effect in January 2017, and that will allow the combining of commercial, academic, and teaching data for research uses. Concomitantly, a strong cooperation has been emerging between and among government ministries, public administration, and the private sector, around the gathering and analysis of data, for these kinds of purposes. And IBM is supporting this project, through a pilot. The IBM people are going to decide whether they might choose to build a Watson competence center here, to learn from this and further support it.

What is the larger end-goal in all of this activity? Enhanced health status for Finns?

Yes, exactly that. The pharma industry will have access to real-world data, including on healthy people. And we have genomic data from healthy people here. One real breakthrough will be the ability to study the prevalence and characteristics of different diseases, using data both from individuals who have those diseases, and from healthy people.

So we have population cohorts that are very interesting to research. But it’s not just data in the electronic health record and other clinical systems within patient care organizations that we’re talking about. For example, within the biggest hospital region in Finland, they are using a data lake concept, and gathering all data every two minutes, and using Watson to run analytics on it. And they also want to integrate data, in order to better analyze it. In fact, all the university hospitals in Finland are part of a project in which we’re building e-services for citizens. Some things will be over-the-counter, others will require physician orders, just as is the case now around behavioral health [in terms of the types of pharmaceuticals one can obtain over the counter, versus by prescription]. So you’ll have your own patient data from yourself as a healthcare consumer, plus the data from the care delivery system. And the result will be a combined personal health record and electronic health record, all put together with the genomic data that is being created and stored for people in Finland.

And, the Helsinki Hospital region is participating in that project, and so is the western hospital region, centered around Turku. Also collaborating on that project is the THL, the National Institute for Welfare. In addition, the National Archive is building a permission tool to have one access for all permissions. It might take three years to get the permits to use data from all different sources. We hope to shorten that cycle.

So one element of this, then, involves getting patients engaged as part of their care delivery team?

Yes, and this virtual hospital concept is very interesting. One of their “virtual houses” is for people who are overweight—teaching them healthy habits—and using that information for the research. It’s not just patient registries, not just clinical information, but lifestyle information, too.

So as you gather all this data from disparate sources, you’ll be able to slice and dice it in different, useful ways, yes?

Yes; and we’re even bringing the biohacker community into this work, getting them involved. Biohackers are going to be used to help demonstrate what the services involved should look like, including e-services and remote services.

Where should Americans go with our thinking, hearing about Finland and the Nordic countries in their innovations, such as this set of innovations?

One thing I really like to think, is that you need a new mindset. We’re used to thinking of data as a scarce resource that is siloed and restricted in its access. By using the data lake concept, with its idea that you don’t need to structure or clean your data, you can just store your data in a cloud, and then, based on your needs, you can start harmonizing and consolidating your work. So everything’s possible, and you can really combine your data, and use technology as an enabler, rather than getting stuck in the weeds. So big data and data lake as concepts can really be transformative. But it requires a different mindset. You have to show to people that they can get better health, and that should be enough. You don’t need to have such strict rules. We’ve made strict legislation on privacy in the Nordic countries, and maybe that’s one reason that we’ve gained high trust from consumers and citizens, and therefore, can do this kind of innovative work with data. And you have to maintain that high trust. But if you can do that, the opportunities are huge, going into the future, to leverage data to improve the health status of communities.

 


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Precision Medicine Alliance Brings Democratization of Precision Medicine

October 5, 2018
by Damon Hostin and Robert Weil, M.D., Industry Voices
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The goal is for every patient to have access to the best treatment possible, when and where they need it.

Hospitals are built on data. Most often, medical data for research pile up in silos instead of being appropriately shared to develop more innovative ways to treat patients.

At Catholic Health Initiatives and Dignity Health, we have started to think differently about the possibilities that surround the data and expertise our clinicians bring to solving our patients’ care needs.  It’s why we joined forces to create the nation’s largest precision medicine partnership.

Because of that spirit of innovation, investment and the information-sharing agreements we established under the Precision Medicine Alliance, LLC, about 12 million patients in 16 states will have access to more promising treatments based on a genetic understanding of their disease.

The alliance currently is focused on advanced diagnostic tumor profiling. However, we are preparing ourselves to provide more specific diagnostic and personalized therapies for a number of genetic and acquired conditions, including cardiovascular medicine, neonatology and pharmacogenetics.

Before the alliance was formed, access to precision medicine-based care was inconsistent to all populations, making it available primarily to the well-insured and those with the personal wealth needed to pay for the specialized tests.

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In a sense, the alliance represents the democratization of precision medicine. That’s because, for the first time, we have created a cost-efficient program that allows community-based hospitals, both large and small, to become partners with the alliance and introduce these vital programs locally.

The alliance highly complements national oncological programs at CHI and Dignity Health, which together serve more than 100,000 patients annually. Starting this fall, each oncology patient at active sites will be matched to all biomarker-appropriate therapeutics and will be screened for eligibility to enroll in a clinical trial. This makes Englewood, Colo.-based CHI and Dignity Health, which is headquartered in San Francisco, the first health systems in the nation with their own precision medicine program with reach across a national footprint. Together, the two systems have 139 hospitals and hundreds of other care sites.

The alliance couldn’t have happened soon enough amid the rapid pace of advancement in cancer treatments. Identifying new genetic markers and their effects on cancer occurrence, prognosis, and treatment options occurs at a staggering pace. Even the best-informed physicians may struggle to keep up with new treatment regimens for the most common cancers, let alone rarer forms. 

The alliance is working to accelerate change. It is switching how we view and treat oncology patients throughout our network as well as working on wellness and prevention among our higher risk populations.

By actively screening patients and learning more about how genetic makeup and some environmental factors may influence health and care, we are far better positioned to identify and intervene earlier.

We already have hundreds of thousands of patients under management in the system today—a mega-community of actionable medical information. That community is enabling CHI and Dignity Health caregivers to share—in real time—their insights and outcomes on patients with cancer.

At CHI and Dignity Health, we see our early work as a catalyst for furthering this emerging science, using next generation strategies, technologies and a strong partnership.  Our precision medicine alliance is not centered on discovering the next major genetic marker.  We view our purpose as creating a model that disseminates the benefits of precision medicine to more patients and more caregivers.  Access is equity and it is dictated by our mission.

Through the alliance, CHI and Dignity Health caregivers can more effectively identify the best drug therapies and possible clinical trials for their patients. Besides changing the way we treat some of our patients, we are also creating a repository of data to drive better clinical decision-making and treatment discoveries for generations to come.

We believe our early commitment to precision medicine through the alliance has helped set the stage for even greater and wider use of this promising methodology. With that, every patient can have access to the best treatment possible, when and where they need it.

Damon Hostin is the CEO of the Precision Medicine Alliance of Catholic Health Initiatives and Dignity Health.  Robert Weil, M.D., is senior vice president and chief medical officer of Catholic Health Initiatives and a board member of the Precision Medicine Alliance.


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On Staten Island, a Highly Innovative Program That's Redefining What’s Possible Under Medicaid

September 17, 2018
by Mark Hagland, Editor-in-Chief
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Healthcare leaders on Staten Island have been achieving exciting success in care management and population health management in their community’s Medicaid and uninsured populations

Even as one hears constant complaints and concerns about the challenges facing healthcare leaders who are attempting to help shift the U.S. healthcare system from volume to value, more and more truly encouraging stories are emerging about pioneering organizations that absolutely are moving the needle, in the present moment. One of those encouraging stories absolutely revolves around the Staten Island Performing Provider System (SI PPS), a unique organization whose leaders describe it as a “Medicaid redesign program implementation enterprise.” Under the leadership of Joseph Conte, Ph.D., CPHQ, its executive director, SIPPS has been forging a path forward around robust population health for Medicaid recipients on Staten Island, the New York City borough that is the by far the smallest in population (479,000, compared to Brooklyn, at 2.6 million in population) yet third-largest in land mass, among the city’s five boroughs.

The Staten Island Performing Provider System has been participating very successfully in the Delivery System Reform Incentive Payment (DSRIP) program under the aegis of the federal government. What is involved in New York State’s DSRIP? As NYSDRIP’s website notes, “DSRIP is the main mechanism by which New York State will implement the Medicaid Redesign Team (MRT) Waiver Amendment. DSRIP´s purpose is to fundamentally restructure the health care delivery system by reinvesting in the Medicaid program, with the primary goal of reducing avoidable hospital use by 25 percent over five years. Up to $6.42 billion dollars are allocated to this program with payouts based upon achieving predefined results in system transformation, clinical management and population health.” The federal Centers for Medicare and Medicaid Services (CMS) approved New York State’s Medicaid waiver requested in the amount of $8 billion over five years, in April 2014.

And SI PPS manages the care of 130,000 Medicaid recipients on Staten Island, in addition to managing the care of 50,000 uninsured Staten Islanders.

According to SIPPS leaders, “Staten Island Performing Provider System (SI PPS) is an alliance of clinical and social service providers focused on improving the quality of care and overall health for Staten Island’s Medicaid and uninsured populations, which include more than 180,000 Staten Island residents. We are co-led by Staten Island University Hospital and Richmond University Medical Center. Our network of over 70 partners includes skilled nursing facilities, behavioral health providers, home health care agencies and a wide range of community-based hospitals, clinical facilities, treatment centers, social service and community organizations, primary care physicians and medical practices across the island. SI PPS is expected to bring more than $200 million to Staten Island over 5 years if successful in transforming our care delivery system. Our mission is to engage partners and stakeholders in the planning and implementation of DSRIP as we move towards a value-based payment model for Medicaid in New York State.”

Among the goals that SI PPS leaders have set for themselves:

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> Develop an infrastructure that lays the foundation for delivery system reform by transforming the Staten Island community through investment in technology, tools, and human resources that will strengthen the ability of providers to better serve our community

> Improve health literacy and share cultural competency knowledge

> Expand access to the appropriate level of care for all patients, including reducing barriers to care

> Expand outpatient and community services including home care, ambulatory detox, behavioral health/substance abuse, and primary care to reduce avoidable hospital/emergency department use on Staten Island

> Improve coordination of care and develop an integrated network

> Improve care management and disease management for high-risk patients, including patients with chronic conditions and behavioral health diagnosis

> Improve population health by addressing social determinants of health

> Integrate technology to allow for the secure exchange of health information across the PPS

> Reduce the per person cost for providing care

> Engage the uninsured, and underutilizing/low utilizing Medicaid patients and connect them to primary care and social services

> Implement innovative and evidence-based care models throughout the care continuum

> Implement training programs and learning collaborations between PPS partners that allow for the sharing of best practices

SI PPS leaders state that “These goals are being reached by implementing 11 DSRIP Projects, identified by a Community Needs Assessment, to address primary care, mental health, substance abuse, chronic disease, long term care, social determinants of health, and population heath.”

SI PPS leaders add that “We leverage a seamless platform that gathers data from multiple sources -- claims data, core reports, department of health information and the like -- and that data is inserted directly into the electronic data warehouse. With geo-mapping, we can identify areas that are lacking in key services. In creating maps of the population, we can filter in on specific conditions, and if we hover over a specific area within a specific map, we can see three years of claims data. We can figure out utilization trends, including hospitalization, medications, etc. We can also filter by demographics, types of chronic illness, etc.” Among the data sources they are make use of include direct data feeds from partners; lead providers’ clinical data; other partners’ clinical and billing data; data from care management partners; and public data; among other sources.

In addition, the SI PPS leaders have plunged into behavioral healthcare management. They note that they are pursuing “a population-health and community wide effort that aims to build capacity across systems by leveraging and developing partnerships to provide a quality integrated health care system, effective, high quality, person-centered care that supports improved health outcomes and optimal physical and emotional well-being. BHIP priorities focus on increasing and sustaining mental health/SUD provider service capacities, assisting community members to navigate behavioral health services, providing support to individuals and providers through education and technical assistance, addressing co-morbidities and co-occurring disorders, and reducing stigma and raising awareness about behavioral health wellness.” Among the numerous individual programs encompassed by the Behavioral Health Infrastructure Program (BHIP) are programs to expand the capacity of professionally certified peer workers in addiction and mental health, to help tackle the substance abuse program; the engagement of patients in the Emergency Department with substance use issues by clinicians and certified Peers to expedite linkages to behavioral health providers and reduce preventable ED visits; an innovative pre-arraignment diversion program designed to redirect low-level drug offenders to community-based health services instead of jail and prosecution; and numerous other programs.

Recently, Dr. Conte spoke with Healthcare Informatics Editor-in-Chief Mark Hagland regarding the progress being made at SI PPS, and the implications of his team’s work for transformation across the U.S. healthcare system. Below are excerpts from that interview.

Can you explain the basic funding mechanism or model that is supporting your organization?

The New York State Department of Health negotiated a waiver with CMS, and received $7.2 billion over five years to fund the program. About 50 percent of that was guaranteed for pay-for-reporting and program implementation, and 50 percent was set up as pay for performance, so it is very much a pay for performance program. There are 6 million people on Medicaid, and the state spends $65 billion a year, and the federal government pays for half of that; that’s why it’s very much in their interest to fund population health; it pays dividends to everyone.

To take care of the entire Medicaid population on Staten Island?

It’s interesting. We do not pay claims or intervene on behalf of providers, with managed care companies. Our sole purpose is to create innovation and reach population health milestones with providers in the community. So the hospitals, nursing homes, FQHCs, physicians, continue in their payment systems. We exist solely to create innovation and to incent innovation. It’s very much a pay for performance program.

Tell me about some of the main programs that you and your colleagues have been involved in, around this work?

The main initiatives relate to creating integrative care models where we bring in behavioral health providers to work with medical providers and medical providers who work in behavioral health organizations, so people don’t have to shuttle around to access care. We’ve done a great deal in the prevention of avoidable use of EDs for medical and behavioral care; that’s down over 60 percent in the past three years. And a lot of that has to do with looking at data form multiple sources and identifying where initiatives should be implemented. So we have a very big focus on asthma and a very big focus on diabetes. And a lot of the work involves engaging patients with peer educators who suffer from these conditions themselves.

One of the biggest innovations has been doing this with people who have alcohol and substance abuse disorders. We have peers in the EDs 24/7; and the number of people who have engaged in treatment services has tripled in the past few years. We’ve paid the salaries for these individuals, we’ve paid their training, have paid them to go get certified; and as they’ve become certified, they’ve become hired by the organizations, because their services are actually billable. So it helps the individual, helps the patient care organizations, helps the community. And it all comes out of high-level data analytics, doing hot-spotting, geo-mapping, bringing in social determinant of health factors, looking at housing, crime statistics, poverty, graduation lists, things like that. So we’ve done things very fundamental to services, to healthcare services, but in a very smart way. The workforce transformation is also very important; we spend a lot of time and training preparing people for new roles.

What have your biggest lessons been learned so far?

I would say it is that the kind of collaboration that it takes to create transformation is something that people really want to do; but they need organizations like ours that can bring these high-level analytics and resources together. And that includes training to give people new education; as well as providing to organizations high-level opportunities to identify patients most in need. You know, you can hunt for ducks with a shotgun, but it’s not a good idea when you’re trying to conserve ammunition, right? So we’ve helped people put a fine aim on things that need to be worked on, and the community coalitions are very powerful; you can’t go it alone, so working with local governmental units is very important. Also, bringing in information form as many sources of information as possible essential. We bring in ambulance data, social determinants of health data, school data, community data; all are essential.

Have you done geo-mapping or hot-spotting? How did you figure out how to obtain those various types of data?

When we started up, we were a complete start-up; so we didn’t have any legacy systems. So we hired very bright IT people and analysts, and brought the right tools to bear so that we could really be focused on how the resources were applied; that was our core investment.

What advice would you offer the senior healthcare IT leaders in patient care organizations, including the CIOs, CMIOs, CQOs, chief data officers, etc., in terms of what they should think about around all of this?

I would tell them that turning data into business intelligence is critical, and that’s true with respect to everybody. For the medical people, it’s medical business intelligence; for the finance people, it’s financial business intelligence. Don’t get overwhelmed with data; use it to create good information for clinical and business practices, and that will allow you allow you to be successful.

What will happen in the next couple of years?

There are about 13 states that have Medicaid redesign waivers in place now; CA and TX have received extensions, and we’re hoping for an extension. We’re also looking for other opportunities to extend our work; we’ve set up an ACO. We’ve set up a form of consultancy as well.

Where do you hope to go in terms of accomplishments in the next few years?

The important thing is for us to do things that are sustainable in the community whether we continue on or not, and that’s a lot of the work we have done—it is to grow capacity in organizations in the community. And that’s why the workforce work is so important. When people have new skills and training and ability to bring change into their organizations, these certainly are sustainability factors that are important.

Is there anything you’d like to add?

I would say one thing that we’re spending much more time on now, is continuing to try to work in the behavioral health space, because especially in the Medicaid population, any number of people have co-occurring conditions—they have medical and behavioral problems. And these are the patients with the most problems and who need the most services. So giving them access to more services is important, but also being able to be more predictive about when they’ll need those services, so we can be smarter about it; that is really important.

 

 

 

 


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Cardiovascular care stands to be nothing less than transformed by the potent technologies emerging now and in the near-term future—ushering in changes to not only how readily and effectively we can diagnose and treat illness, but also in how accurately we can predict and even stave it off. From measurably more productive workflows to palpably more precise assessments, technology surely has much in store for us. Artificial intelligence, seamless data integration, remote image access, and other advances are, quite simply, game changers in cardiology, with cardiologists, their patients, and the healthcare system standing to benefit.

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