The use of data from electronic health records in times of a pandemic-a legal and ethical assessment.
Karl StögerMartina SchmidhuberPublished in: Journal of law and the biosciences (2020)
National electronic health record systems controlled (at least in parts) by the patient are becoming increasingly common. During a pandemic, data stored in such records could be used by health authorities to identify persons with a particular health risk. In this contribution, the authors focus-from the perspective of law and medical ethics-on the question whether such state access to data could, under certain circumstances, be disadvantageous to a person's state of health in the long run. This may be the case if the data extracted is not only used for the purpose of informing persons, but serves as a basis for measures taken against the will of the individual concerned. This might be perceived as a "breach of trust" and could result in persons opting out of or not opting into an electronic health record system. Such unintended consequences raise concerns from an ethical and a legal point of view. It follows that, even in times of a pandemic, access to personal data stored in patient-controlled health records should be used as a last resort only. While this contribution deals with the legal framework within the EU, its considerations are transferable to other national electronic health record systems.
Keyphrases
- electronic health record
- clinical decision support
- healthcare
- public health
- adverse drug
- sars cov
- coronavirus disease
- mental health
- health risk
- health information
- physical activity
- case report
- heavy metals
- quality improvement
- drinking water
- machine learning
- big data
- social support
- decision making
- artificial intelligence
- risk assessment
- human health
- climate change
- room temperature