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Huge advance in well-being data use

Pekka Kahri explains how Finland is well placed to make large strides in well-being data management.

Photo: Sanna Säilynoja

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The Isaacus – Digital Health Hub is currently under development and will combine well-being databases and their users in a seamless and safe manner. This will be inclusive for individuals, promote well-being and create a well-being and health ecosystem that is constantly learning. The Isaacus blog series gives experts the opportunity to shed light on the topic from their own perspective.

Change is already on the horizon – moving from scattered data towards a one-stop-shop

Data has been collected in various forms for centuries, a fact that becomes very evident when examining the history of statistics. Data volumes everywhere are growing exponentially, and at the same time new information processing technologies are becoming a part of everyday life. Innovative data-based products and services are expected to be one of the most important sources of success for societies and business in the future.

Finland is well-equipped to succeed in the new data economy, where public sector data reserves will play a key role. We currently gather a great deal of digital information into the national and local information systems of various authorities. Unfortunately, this scattered information is primarily only used for its original purpose within the generating organisations, which in turn have their own methods and customs for processing data requests and releasing data. Secondary use of health and well-being data is also strictly limited to statistics and scientific research, in part due to legislation.

Statistics Finland, the National Institute for Health and Welfare (THL) and Kela will be key players in resolving the issues related to utilising these health and well-being data reserves. A majority of the data flows needed for basic tasks performed by information authorities have already been covered by special arrangements among the institutions. In contrast, the use of other data reserves has been more or less a secondary activity for all parties involved.

Change is on the horizon. The Ministry of Health and Social Affairs’ working group on legislation to enable secondary use of social and healthcare information and Sitra’s Digital Health Hub initiative are both contributing to making a huge advance in national development.

Existing information authorities will play an important role in building the national service package associated with making the best use of data reserves. However, it’s important to avoid creating new bottlenecks or overlapping and bureaucratic structures. The focus must be on solving the problems of the current system, which are related to a decentralised permit procedure, the lack of metadata for data reserves, bureaucratic practices, and insufficient data flows between different organisations. The starting points have to be good customer service, co-operation to improve resource use, and avoiding all overlapping processes.

Accessibility is the key to utilising data reserves

Finland needs a real one-stop-shop for well-being and health data permits and data transfer that provides broad access to the sources of information generated by different organisations. The service should give the customer access to sample-based population research data about well-being, social and health registers and patient documents, socio-demographic population data registers, benefit and compensation registers, and data containing biological samples.

However, a permit portal and technical data warehouse is not enough. They only represent the tip of the iceberg, and we also want to draw attention to the skill sets needed under the surface.

When a customer has data needs, everything starts with being able to find that data. This requires a significant amount of information about the data, which is also known as open metadata. At the end of the process, the customer should have the opportunity to use the data for the purpose the permit was granted for. Whenever possible, complex processing of material containing sensitive personal information from different data reserves must take place in a data-secure processing environment, or via remote access.

The issues of metadata and remote access are basic infrastructure questions that must be resolved in any case, and they will require long-term investments. We very much hope to see them added to the national road map and handled through that process. If this does not happen, the foundation for efficient data use that citizens have confidence in will be flimsy.

Permit processing creates added value for data users

The middle phases of the process between finding and using the data include an important role for the digital health hub in terms of producing added value: permit processing and data combination, covering all the central data sources needed by the people using the data. A closer look at permit processing sheds more light on the issue.

Let’s assume that about half of the processed permit and data requests come from very competent and experienced customers. These applications are high quality and as such can usually be handled in a couple of weeks. The technical compiling of the data can also be started immediately, which means that it could be ready when the permit decision is officially issued. This type of processing and evaluation does not require the most in-depth or experienced competence, which only exists with the original data reserve controller.

A vast majority of the remaining cases would benefit greatly from having the plan clarified by means of sparring questions and by a closer examination of the possibilities and limitations of the available data and alternative sources. When dealing with these situations, the permit handler needs to consult with a network of experts. Some 10% of the cases are more problematic: certain applications are very poorly presented or missing sections that are essential to approval. In addition, there are always some particularly challenging cases involving, for example, complicated legal, data protection or cross-border collaboration issues. These cases always involve consulting with other authorities, such as the Data Protection Ombudsman.

Existing competence has to be redirected

Industrial players that are considering research and development investments would benefit from a consulting service associated with the use of data reserves. Companies might need help finding partners, solving data-related permit issues and even support for producing an application of sufficient quality. We should have a body that could offer such services and cover the costs by means of service charges based on an open price list. In practice, the service should be very close to the authority granting the permits, operating under its mandate, but still independent enough to ensure that the roles of the people preparing the permit decisions and those who support the customer in preparation remain separate.

Along with comprehensive data reserves and significant content expertise, THL has experience with permit activities, combining different data reserves and promoting the use of data reserves in general. The data policy published by the institute and the role of a new expert bureau for the social welfare and healthcare reform that has been outlined for THL will require a redirection of the accumulated experience and the building of new operating processes. The skills needed for our future core tasks are mainly the same as those required for using well-being and health data in national service activities. These skills can best be strengthened as a whole and in close co-operation with other key actors.

Read more

THL’s data policy Efficient use of datasets (pdf 227 kb) (in Finnish)

“Data is the new oil” (in Finnish)

#Isaacus

Authors:

Pekka Kahri is the Director of Information Services at the National Institute for Health and Welfare (THL). pekka.kahri@thl.fi @kahripe

Risto Kaikkonen is the head of the Information Resource Services Unit at the National Institute for Health and Welfare (THL). risto.kaikkonen@thl.fi

Topic

Well-being data

The flexible use of well-being data provides high-quality research, treatment and care. We are developing a way to collect and distribute well-being data from a one-stop shop. #isaacus

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