Marketing Populations for Biomedical Research

Tupasela, Aaro

doi:10.1007/978-3-030-78578-9_2

Cited by 6 publications

(22 citation statements)

References 79 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Political strategy papers brand Denmark as an ideal context for life science research and drug development (Danske Regioner 2015 ; Sundhedsministeriet og Danske Regioner 2021; Ministry of Foreign Affairs 2014 ). Like other Nordic countries, such as Finland, it is a key policy vision to use health data to attract international commercial investments in research and innovation (Tupasela 2021 ). To attract biomedical companies, Denmark established an infrastructural project termed Trial Nation in 2018.…”

Section: Context: Policy Visions and Data Work In A Highly Integrated...mentioning

confidence: 99%

“…Such initiatives received further support with a new Life Science Strategy, published by the Danish government (Regeringen 2021 ). It is a common feature, globally, of data integration initiatives that countries compete against each other (Vezyridis and Timmons 2021 ) and increasingly use health data as assets aimed at “branding” (Tupasela 2021 ). The ambition to reuse health data for research, innovation, and administration installs new demands on data quality and availability, as well as on the standardization and completeness of datasets (Petersen 2019 ).…”

Section: Context: Policy Visions and Data Work In A Highly Integrated...mentioning

confidence: 99%

“…The policy goal of data repurposing is fueled by a widespread discourse around health data being an untapped resource for bioeconomic policies (OECD 2013 ), as “repositories for data ready for statistical analysis” (Barilan and Brusa 2022 , p. 2). In the Nordic countries, health data are often framed as an unexploited “goldmine”, the data being “gold” that could be extracted from the existing—and highly integrated—data sources, to promote health and wealth (e.g., Nordforsk 2014 ; see also Tarkkala et al 2019 ; Tupasela 2021 ). In the UK, the Department of Health has stressed the need to “liberate” national health data for additional purposes, via new infrastructures that will improve the “flow of information between organizations” (UK Department of Health 2011 : 48).…”

Section: Introductionmentioning

confidence: 99%

“…Since 1968, the personal identifier has been assigned to all Danes at birth and enables the establishment of lifelong data trajectories at the individual level and across sectors—a feature that has made Denmark internationally known as “the epidemiologist’s dream” (Frank 2000 ; Bauer 2014 ; Schmidt et al 2019 ). Tupasela ( 2021 ) describes the political strategies in Nordic countries, including Denmark and Finland, as population branding that reframes healthcare systems, health data, and populations as assets for developments of and investments in genomic medicine. These include centralized health data registers, wide healthcare coverage, the relatively high genetic homogeneity of the populations, as well as the high public trust in data collection.…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

The practical ethics of repurposing health data: how to acknowledge invisible data work and the need for prioritization

Green

Hillersdal

Holt³

et al. 2022

Med Health Care and Philos

View full text Add to dashboard Cite

Throughout the Global North, policymakers invest in large-scale integration of health-data infrastructures to facilitate the reuse of clinical data for administration, research, and innovation. Debates about the ethical implications of data repurposing have focused extensively on issues of patient autonomy and privacy. We suggest that it is time to scrutinize also how the everyday work of healthcare staff is affected by political ambitions of data reuse for an increasing number of purposes, and how different purposes are prioritized. Our analysis builds on ethnographic studies within the Danish healthcare system, which is internationally known for its high degree of digitalization and well-connected data infrastructures. Although data repurposing ought to be relatively seamless in this context, we demonstrate how it involves costs and trade-offs for those who produce and use health data. Even when IT systems and automation strategies are introduced to enhance efficiency and reduce data work, they can end up generating new forms of data work and fragmentation of clinically relevant information. We identify five types of data work related to the production, completion, validation, sorting, and recontextualization of health data. Each of these requires medical expertise and clinical resources. We propose that the implications for these forms of data work should be considered early in the planning stages of initiatives for large-scale data sharing and reuse, such as the European Health Data Space. We believe that political awareness of clinical costs and trade-offs related to such data work can provide better and more informed decisions about data repurposing.

show abstract

Section: Context: Policy Visions and Data Work In A Highly Integrated...mentioning

confidence: 99%

Section: Context: Policy Visions and Data Work In A Highly Integrated...mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

The practical ethics of repurposing health data: how to acknowledge invisible data work and the need for prioritization

Green

Hillersdal

Holt³

et al. 2022

Med Health Care and Philos

View full text Add to dashboard Cite

show abstract

“… 6 , 7 In some cases, publics, consisting of the people the data concern, ‘bite back’ if data are used in ways they find inappropriate. 8 Public issues around the use of health data can ultimately jeopardise the opportunity to reuse health data for secondary purposes. 9 This shows the importance of exploring issues about reuse of health data to better enable the development of legitimate governance.…”

Section: Introductionmentioning

confidence: 99%

Who tweets what about personalised medicine? Promises and concerns from Twitter discussions in Denmark

Skovgaard

Grundtvig

2023

DIGITAL HEALTH

View full text Add to dashboard Cite

Digital health data are seen as valuable resources for the development of better and more efficient treatments, for instance through personalised medicine. However, health data are information about individuals who hold opinions and can challenge how data about them are used. Therefore it is important to understand public discussions around reuse of digital health data. Social media have been heralded as enabling new forms of public engagement and as a place to study social issues. In this paper, we study a public debate on Twitter about personalised medicine. We explore who participates in discussions about personalised medicine on Twitter and what they tweet about. Based on user-generated biographies we categorise users as having a ‘Professional interest in personalised medicine’ or as ‘Private’ users. We describe how users within the field tweet about the promises of personalised medicine, while users unaffiliated with the field tweet about the concrete realisation of these ambitions in the form of a new infrastructure and express concerns about the conditions for the implementation. Our study serves to remind people interested in public opinion that Twitter is a platform used for multiple purposes by different actors and not simply a bottom-up democratic forum. This study contributes with insights relevant to policymakers wishing to expand infrastructures for reuse of health data. First, by providing insights into what is discussed about health data reuse. Second, by exploring how Twitter can be used as a platform to study public discussions about reuse of health data.

show abstract

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

Helén,

Lehtimäki

2023

EJIM

View full text Add to dashboard Cite

PurposeThe paper contributes to the discussion on valuation in organization studies and strategic management literature. The nascent literature on valuation practices has examined established markets where producers and consumers are known and rivalry in the market is a given. Furthermore, previous research has operated with a narrow meaning of value as either a financial profit or a subjective consumer preference. Such a narrow view on value is problematic and insufficient for studying the interlacing of innovation and value creation in emerging technoscientific business domains.Design/methodology/approachThe authors present an empirical study about value creation in an emerging technoscience business domain formed around personalized medicine and digital health data.FindingsThe results of this analysis show that in a technoscientific domain, valuation of innovations is multiple and malleable, entails pursuing attractiveness in collaboration and partnerships and is performative, and due to emphatic future orientation, values are indefinite and promissory.Research limitations/implicationsAs research implications, this study shows that valuation practices in an emerging technoscience business domain focus on defining the potential economic value in the future and attracting partners as probable future beneficiaries. Commercial value upon innovation in an embryonic business milieu is created and situated in valuation practices that constitute the prospective market, the prevalent economic discourse, and rationale. This is in contrast to an established market, where valuation practices are determined at the intersection of customer preferences and competitive arenas where suppliers, producers, service providers and new entrants to the market present value propositions.Practical implicationsThe study findings extend discussion on valuation from established business domains to emerging technoscience business domains which are in a “pre-competition” phase where suppliers, customers, producers and their collaborative and competitive relations are not yet established.Social implicationsAs managerial implications, this study provides insights into health innovation stakeholders, including stakeholders in the public, private and academic sectors, about the ecosystem dynamics in a technoscientific innovation. Such insight is useful in strategic decision-making about ecosystem strategy and ecosystem business model for value proposition, value creation and value capture in an emerging innovation domain characterized by collaborative and competitive relations among stakeholders. To business managers, the findings of this study about valuation practices are useful in strategic decision-making about ecosystem strategy and ecosystem business model for value proposition, value creation and value capture in an emerging innovation domain characterized by collaborative and competitive relations among stakeholders. To policy makers, this study provides an in-depth analysis of an overall business ecosystem in an emerging technoscience business that can be propelled to increase the financial investments in the field. As a policy implication, this study provides insights into the various dimensions of valuation in technoscience business to policy makers, who make governance decisions to guide and control the development of medical innovation using digital health data.Originality/valueThis study's results expand previous theorizing on valuation by showing that in technoscientific innovation all types of value created – scientific, clinical, social or economic – are predominantly promissory. This study complements the nascent theorizing on value creation and valuation practices of technoscientific innovation.

show abstract

Marketing Populations for Biomedical Research

Cited by 6 publications

References 79 publications

The practical ethics of repurposing health data: how to acknowledge invisible data work and the need for prioritization

The practical ethics of repurposing health data: how to acknowledge invisible data work and the need for prioritization

Who tweets what about personalised medicine? Promises and concerns from Twitter discussions in Denmark

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

Contact Info

Product

Resources

About