Value-creation in the health data domain: a typology of what health data help us do

Abstract

It has become a trope to speak of the increasing value of health data in our societies. Such rhetoric is highly performative: it creates expectations, channels and justifies investments in data technologies and infrastructures, and portrays deliberations on political and legal issues as obstacles to the flow of data. Yet, important epistemic and political questions remain unexamined, such as how the value of data is created, what data journeys are envisioned by policies and regulation, and for whom data types are (intended to be) valuable. Drawing on two empirical cases, (a) interviews with physicians on the topic of digital selfcare, and (b) expectations of stakeholders on the use of Real-World Data in clinical trials, as well as existing literature, we propose a typology of what health data help us to do. This typology is intended to foster reflection about the different roles and values that data use unfolds. We conclude by discussing how regulation can better accommodate practices of valuation in the health data domain, with a particular focus on identifying regulatory challenges and opportunities for EU-level policy makers, and how Covid-19 has shed light on new aspects of each case.

Valuation in emerging technoscience business: a case study of Finnish biobank research

“…Discourses on personalized medicine, biobanking, and other data sourcing facilitating the development of future medicine encompass multiple values and utilities because they portray biomedical research as promising with more precise and personally customized prevention and treatment of diseases. It is performed as if it is a revolutionary force that will provide many types of benefits to a broad set of stakeholders nationally and globally, including science, clinicians, healthcare, patients, citizens, society and economy (Tutton, 2014; Baltrame and Hauskeller, 2018; Prainsack, 2019; Datta Burton et al ., 2022; Fiske et al. , 2023).…”

“…Our analysis of FinnGen as a representative of emerging technoscience business addresses four topics crucial for comprehending value creation in this kind of business domain. First, value attached to a novel item, technique, or activity are not only, or even predominantly, commercial or monetary but multiple within an emerging domain where technoscience and business are entangled (see Dussauge et al ., 2015b; Datta Burton et al ., 2022; Fiske et al. , 2023).…”

“…The value, for example, attached to patient data or a potential biomarker by valuation practices and discourses can be simultaneously multiple, malleable, and not merely or even predominantly commercial or monetary (Dussauge et al ., 2015b; Beltrame and Hauskeller, 2018; Datta Burton et al. , 2022; Fiske et al. , 2023).…”

“…Discourses on personalized medicine, biobanking, and other data sourcing facilitating the development of future medicine encompass multiple values and utilities because they portray biomedical research as promising with more precise and personally customized prevention and treatment of diseases. It is performed as if it is a revolutionary force that will provide many types of benefits to a broad set of stakeholders nationally and globally, including science, clinicians, healthcare, patients, citizens, society and economy (Tutton, 2014;Baltrame and Hauskeller, 2018;Prainsack, 2019;Datta Burton et al, 2022;Fiske et al, 2023). A list on FinnGen's website epitomizes such all-encompassing valuation: "general benefitsto medicine and benefits to " "the public, Finnish companies, biobanks, the healthcare system, and academic research", as well as "strengthening of the business ecosystem" are among the blessings FinnGen will bring; on top of that, "all breakthroughs that arise from the project will eventually benefit healthcare systems and patients globally" (www.finngen.fi/en/goals_and_benefits).…”

“…From this perspective, value is created or added in innovative R&D through various sociotechnical or political practices and discourses that attach and attribute value to things or activities, and define, assess, and measure value within a technoscientific business domain, such as personalized medicine. The value, for example, attached to patient data or a potential biomarker by valuation practices and discourses can be simultaneously multiple, malleable, and not merely or even predominantly commercial or monetary (Dussauge et al, 2015b;Beltrame and Hauskeller, 2018;Datta Burton et al, 2022;Fiske et al, 2023). Furthermore, all types of activities in a technoscience domain such as biomedicine can be considered as practices of valuation.…”