Making Health Data Trustees Sustainable: An Overview of Potential Business and Financing Models
Author(s)
Julia Busch-Casler, Dr.1, Anika Teichert, MSc1, Friederike Bach, Dr.2, Anna-Louisa Eulitz, BSc3.
1Human & Technology, Helmholtz-Zentrum Dresden Rossendorf (HZDR), Leipzig, Germany, 2Fraunhofer Center for International Management and Knowledge Economy - IMW, Leipzig, Germany, 3Fraunhofer ISI, Leipzig, Germany.
1Human & Technology, Helmholtz-Zentrum Dresden Rossendorf (HZDR), Leipzig, Germany, 2Fraunhofer Center for International Management and Knowledge Economy - IMW, Leipzig, Germany, 3Fraunhofer ISI, Leipzig, Germany.
OBJECTIVES: The data trustee concept has received increasing attention in research and policies facilitating the secondary use of health data for both scientific and business purposes, thus, reducing barriers to access health data. While research focuses on the legal, technological and organizational design of data trustees, the business model perspective has received limited attention so far. We aim to answer the research question “What are potential business models for health data trustees?” by identifying existing business models and developing archetypes for health data trustees.
METHODS: We conducted a qualitative interview study with 11 European and non-European data trustees from November 2023 until August 2024. We evaluated the findings from the transcribed and anonymized interviews using qualitative content analysis and deductive coding based on the Business Model Canvas by Osterwalder and Pigneur. Based on the interview results and an expert workshop, we developed a value chain for health data trustees and derived three archetypes of potential business models.
RESULTS: The study revealed a broad variety of services and financing of health data trustees. Interviewees described predominantly “pay-per-use” financing models, supported by additional state financing. The trustees showed different levels of service provision. Some trustees provided services such as paid-for consulting and research services, while others focused on core tasks according to the data value chain (data generation, data acquisition, data processing, data storage, data analysis). We identified three main types of business models: a “FULL SERVICE” model, covering the entire data value chain, a “LAYER PLAYER”, providing specific services of the data value chain and a “COORDINATOR”, focusing solely on intermediary activities. The majority of interviewed data trustees were categorized as layer player.
CONCLUSIONS: There is not yet one established business model for state-organized data trustees. The value chain and archetypes will provide players with options to ensure the financial sustainability of a trustee.
METHODS: We conducted a qualitative interview study with 11 European and non-European data trustees from November 2023 until August 2024. We evaluated the findings from the transcribed and anonymized interviews using qualitative content analysis and deductive coding based on the Business Model Canvas by Osterwalder and Pigneur. Based on the interview results and an expert workshop, we developed a value chain for health data trustees and derived three archetypes of potential business models.
RESULTS: The study revealed a broad variety of services and financing of health data trustees. Interviewees described predominantly “pay-per-use” financing models, supported by additional state financing. The trustees showed different levels of service provision. Some trustees provided services such as paid-for consulting and research services, while others focused on core tasks according to the data value chain (data generation, data acquisition, data processing, data storage, data analysis). We identified three main types of business models: a “FULL SERVICE” model, covering the entire data value chain, a “LAYER PLAYER”, providing specific services of the data value chain and a “COORDINATOR”, focusing solely on intermediary activities. The majority of interviewed data trustees were categorized as layer player.
CONCLUSIONS: There is not yet one established business model for state-organized data trustees. The value chain and archetypes will provide players with options to ensure the financial sustainability of a trustee.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
RWD120
Topic
Real World Data & Information Systems
Topic Subcategory
Data Protection, Integrity, & Quality Assurance, Distributed Data & Research Networks
Disease
No Additional Disease & Conditions/Specialized Treatment Areas