Should we Embrace Health Data Sharing? (Preprint)

Abstract

<sec> <title>UNSTRUCTURED</title> Patients' health data are routinely collected and stored in hospitals for care delivery. If the data is made available for researchers, it can be secondarily used for artificial intelligence research and development. Data sharing and reuse brought new ethical concerns to healthcare organizations and the medical and research communities alike. In this article, we discuss the main ethical aspects that underpin data sharing decisions: health data ownership, patient consentment, privacy, personal data anonymization, and the purpose of data reuse. Three pillars should guide organizations in data sharing decisions: regulations, ethics, and support for increasing patient engagement. Efforts should be undertaken to explain the risks, benefits, and opportunities of data sharing to patients and society at large. There is a concern that algorithms' outputs are biased, which may be a result of biased datasets. To prevent this, datasets must include a representative cross-section of the population so that discoveries and innovations are generalizable to all people. A deeper understanding of health data reuse by different stakeholders are decisive for elevating population health informatics research. </sec>

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