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

Nov. 27, 2016
Jaana Sinipuro and her colleagues at the SITRA agency are leading an initiative to combine healthcare, social welfare, and consumer data from across databases in Finland, to create a nationwide data hub that can be leveraged to improve the well-being of all Finns

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

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.