Ethical usage of data in long-term care: how do we proceed?

Data, often referred to as ‘the new gold’, has become invaluable in evidencebased healthcare. To improve the quality of care, large amounts of data are constantly collected. By collecting these vast amounts of data, data analytics (i.e. data-driven exploration methods) can be used for exploratory data research, which is aimed at finding patterns and relationships that are (often) not present in small amounts of data. To date, the large amounts of data collected in longterm care for older adults (LTC) are barely processed or analysed, and therefore not used to their full potential. However, with the rise of data accumulation in LTC, data research and the corresponding ethical issues have become a topic of increasing interest, resulting in an ongoing societal debate. This chapter will focus on the ethical questions that arise when collecting and analysing data in this healthcare echelon, which includes some of the most vulnerable people in society. While it is beyond the scope of the current chapter to discuss all ethical issues related to data in LTC, this chapter aims to espouse multidisciplinary dialogues, among a diverse set of stakeholders, regarding data research. This will be done by discussing the challenges that arise when making data a prominent topic in LTC, as well as possible ways to address these challenges, including the creation of living labs in which scientific research is combined with daily care practice.