Health data and public value in the Nordic countries

Abstracts

Imagined Publics driving strategy development in personalized medicine

Lotte Groth Jensen, DEFACTUM and University of Copenhagen, Section of Health Services Research; with Mette Nordahl Svendsen and Karoliina Snell

Across the world, personalized medicine has become a central policy focus during the last two decades. Personalized medicine involves many actors from both the private and public sectors and it relates to citizens in many ways – as patients, data sources, and taxpayers. In addition, it cuts across several policy arenas such as health, research, innovation and economic policy. 

Based on a Danish case-study, we show how the complex notion of personalized medicine has evolved over time in the Danish strategy process. In light of the public’s central role in the realization of personalized medicine, we investigate how central actors in the strategy process imagined and perceived the public. We have analyzed how the notion of personalized medicine evolves over time and how the different policy actors imagine different publics and the association between these two phenomena.

The concept of imagined publics helps to understand how perceptions of citizens are influential on policy and strategy outcome. In our material, the imagined public is both understood as a passive research subject, a patient with the goal of receiving treatment, and an active citizen with the capacity to push back.  We show that an imagined public can have specific consequences for strategy development and thus for the implementation of personalized medicine, by valuing different aspects of personalized medicine. We argue that if imagined publics remain unacknowledged, we fail to realize a main driver of the development of strategies and policies, which can pose a democratic problem.

Negotiating data for local and national purposes: Case of National Quality Registers in Finland

Karoliina Snell and Heta Tarkkala, University of Helsinki

First Finnish national quality registers started to operate in the beginning of 2023. These quality registers are databases used for evaluating and monitoring the treatment of a specific disease or a patient group, treatment methods or related services. They consist of various information related to the patient and her treatment such as laboratory results and patients' self-assessments, expected to tell about quality and effectiveness of care. This kind of quality data have already been collected locally in Finland for a long time. However, the new, nine national quality registers are coordinated and funded on a national level and among them are diabetes, oral health, psychosis, HIV and rheumatism registers.

We will analyze the building process of national quality register with a focus on the negotiations about what data and indicators are included, and what purposes the datasets are expected to serve. With the help of interviews and document material, we analyze the interplay between national and local expectations for quality registers and their data, and contextualize ideas and understandings about what kind of value is expected from them. We are interested in the purposes the data is seen to serve and when different expectations might be in tension, be it related to professional, regional, economical or epistemological dimensions. Our wider interest relates to the interplay between national-level ideas of data and their local uses, appropriations, and purposes, and what implications these have for our wider understanding of secondary uses of public data.

Re-structuring Finnish Health Data Markets – Opportunities and Challenges of the “one-stop-shop” model

Aaro Tupasela, University of Helsinki

During the past decade, Finland has sought to re-organize the way in which public authorities make healthcare data available for secondary use. This re-alignment has been accompanied by changes in other areas, including biobanking where there has been an interest to develop so-called “one-stop-shop” service models whereby customers can access and gain permits from one authority. Using the notion of “data logistics,” I examine the ways in which the re-structuring of Finnish health data markets reflects changes in the values associated with data and its governance. Using the case of Findata, I reflect how broader changes in EU Directives, such as the GDPR, bring about both challenges and opportunities for data governance. At the same time, I identify novel challenges associated with the re-structuring of data governance in Finland.

Welfare by counting? The quantification of ‘what is valuable’ within public health care services

Gunhild Tøndel, NTNU/Dept. of Sociology and Political Science; with Jan Tøssebro and Odd Morten Mjøen

The term “quality” has become an important policy driver within public healthcare services. Quality is often measured quantitatively, for instance through quality indicators (QI). This example expresses a cultural tendency towards quantification that during especially the past thirty years has become a characterization of modern society (e.g. Mennicken and Espeland, 2019). In organizations, this is visible through the structuring of their activity around performance measures, cost-benefit analyses, risk calculations, ratings, and rankings. Welfare state services are no exception and necessitate studies of the co-constructive relationship between policy development for "the good" and tools for knowing the governed.

This paper studies the making of quality into a quantifiable policy through tracing the making of a national system for quality measurement in Norwegian municipal healthcare services. The data material is primarily policy documents covering the period from 1990-2022 (official governmental papers and organizational/technical papers). The documents are complemented with qualitative interviews with key policy actors within the sector. The data is an empirical lens into the emergence and institutionalization of this specific way of knowing “quality” within healthcare policy.

Three analytical levels are treated: national policy, local development and policy, and activities operating in the in-between shades. The paper addresses different services (nursing homes, home-based care services, group homes for intellectually disabled people, people with mental health problems). The paper describes two relatively clear turning points in the trajectory of policy; around 2000 and 2011, with a shift in focus from a typical socio-political reasoning to the quality of care and an introduction of a more facts-based approach to quality. The paper does not call for eliminating QI, but to explore the knowledge that is part of decision-making in this field.

Norway’s health data program: A value shift in governance?

Heidrun Åm, Department of Sociology and Political Science, NTNU

Norway has long traditions of collecting data on its population, for example, in health registries. However, there are complaints that health data is a hidden-away treasure (Emberlandt & Rørtveit 2016). Therefore, the Directorate of e-health works for increasing the use of health data. Their recently finalized ‘Health data program’ aimed at developing a “national ecosystem for health analysis (Ministry of Local Government and Modernization 2021:52).” Its aim was to centralize access and availability of health data and to streamline the application process to health data. The ecosystem should consist of a centralized ‘Health data service’ (a national permission authority to health registries for secondary use of health data) and a ‘Health analytics platform (HAP)’ (a secure platform for access and analysis of data). Efforts for building a HAP were stopped 1,5 years ago, officially because of the Schrems II verdict.

This paper elicits the controversies that emerged when implementing the health data program: what and who is driving the building of a centralized health data infrastructure in Norway and what are the justifications? In Norway, health data may only be used for the expressly stated purpose that is in accordance with the purpose of the relevant health registry from which the data is derived (‘formålsbegrensning’). Secondary use of data seems counterintuitive to this restriction. Thus, the paper asks: How do recent developments in Norwegian health data governance build on or change values and practices regarding issues of data ownership, consent and opt-out, or public purpose evaluations?

Organizers

Heidrun Åm, Lotte Groth Jensen, Karoliina Snell, Aaro M Tupasela, and Heta Tarkkala