What is Health Data? Towards creating a functional characterization

Claus Ivan Rehfeld, Melanie Kreye, Helena Goldstein Wendelboe, Tove Holm-Larsen

Research output: Contribution to journalJournal articleResearchpeer-review

Abstract

Health Data is a commonly used term in many different contexts, but its current definition is vague at best. As a result, effective law making, ethical discussions and development of solutions that relate to Health Data are hindered. Without an agreed definition, decisions on how and when Health Data is utilized will be distorted and inconsistent, and the potential value of this important resource for society will not be realised.
This study contributes to the healthcare literature by offering an empirical characterization of Health Data, enabling a more rigorous and informed discussion through exploration of the following question: “What are the characteristics of Health Data and how can these support the creation of a definition which is functional on an interdisciplinary level?”

Qualitative interviews with 30 Danish stakeholders working with data and health indicate that the definition of Health Data need to incorporate information relating both to clinical data and to a population’s health status and behavior. Furthermore, it must include a distinction as to whether the focus is on the data source, or the use of the data. Lastly, it is important to agree on whether Health Data is defined as data related directly to persons or whether structural data should be part of the definition.
Original languageEnglish
JournalCommunication and Medicine
Publication statusAccepted/In press - 2022

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