What is Health Data?

Towards creating a functional characterization

Authors

  • Claus Rehfeld Technical University of Denmark – DTU
  • Melanie E Kreye Technical University of Denmark – DTU
  • Helena Goldstein Wendelboe DataFair
  • Tove Holm-Larsen Pharma Evidence

DOI:

https://doi.org/10.1558/cam.17951

Keywords:

access to Health Data, data source, Denmark, healthcare sector, Health Data, stakeholder theory

Abstract

‘Health Data’ is a term that is used in many different contexts, but understandings of what it encompasses are at best vague. Without an agreed definition, effective law making, ethical discussions and the development of solutions that relate to Health Data are hindered, and decisions about how and when it can be utilized will be distorted and inconsistent, meaning that the potential value of this important resource for society will not be realized. This study contributes to the healthcare literature by offering an empirical characterization of Health Data, enabling a more rigorous and informed discussion through an exploration of its characteristics and how these can support the formulation of a definition which is functional at an interdisciplinary level. Qualitative interviews with 30 Danish stakeholders working with data and health indicate that a proper definition of Health Data should acknowledge a distinction between when the focus is on the source of the data and when it is on how data is used. Further, it needs to incorporate information relating both to clinical data involving patients and to a population’s health status and behaviors more generally. Lastly, it needs to encompass structural data, pertaining to the health system and to wider societal and environmental factors.

Author Biographies

  • Claus Rehfeld, Technical University of Denmark – DTU

    Claus Rehfeld graduated with an MSc in Economics in 1998 from the University of Copenhagen and founded Rehfeld Partners, delivering solutions with a specific focus on the health sector. He has been active in developments around Business Intelligence and Big Data in Denmark. His company was sold to an American business focusing on the pharmaceutical industry. He is currently pursuing his PhD at the Technical University of Denmark while also being involved in a number of start-ups and consultancy companies in the health tech environment.

  • Melanie E Kreye, Technical University of Denmark – DTU

    Melanie Kreye is Associate Professor in the Department of Technology, Management and Economics Management Science at the Technical University of Denmark. Her research contributes to theory building in the multidisciplinary field of engineering services and servitization, comprising areas such as innovation management, operations management and industrial marketing. These contributions have a strong theoretical and empirical nature.

  • Helena Goldstein Wendelboe, DataFair

    Helena Goldstein Wendelboe holds a BSc in Psychology, and her primary interest is in the use and commercialization of Danish Health Data.

  • Tove Holm-Larsen, Pharma Evidence

    Tove Holm-Larsen, MSc, PhD, is Professor of Health Economic Evidence at the University of Ghent, Belgium and CEO of Pharma Evidence, an international research and consulting firm. She has more than 20 years of hands-on experience in tailoring clinical trials to provide core data for assessment of clinical benefit and in the strategic use of Health Data to improve the healthcare sector. She has written several books and many articles on health economics and assessment of clinical benefits. 

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Published

2022-05-04

Issue

Vol. 17 No. 3 (2020)

Section

Articles

License

copyright Equinox Publishing Ltd.

How to Cite

Rehfeld, C., Kreye, M. E., Wendelboe, H. G., & Holm-Larsen, T. (2022). What is Health Data? Towards creating a functional characterization. Communication and Medicine, 17(3), 270–282. https://doi.org/10.1558/cam.17951