Data use in healthcare: a big contrast between dreams and reality in practice

Many of us dream that data will improve healthcare. In the past few years we have seen how terms like ‘big data’, ‘machine learning’ or ‘artificial intelligence’ keep coming back with similar promises. Data are meant to help lead to faster decisions, more effective interventions and customised treatments. The result would be improved quality of care, lives saved and costs reduced. Marthe Stevens MSc examined this topic in her dissertation. 

In her dissertation, ‘Dreaming with Data: Assembling responsible knowledge practices in data-driven healthcare’, she explored what happens when such ‘data dreams’ lead to concrete initiatives in the healthcare sector. For her research, Marthe conducted a literature review, studied data initiatives in Dutch healthcare organisations and worked on an international comparison between eight European countries. She repeatedly saw the same contract between data dreams and data in practice.  

Dreams that data will revolutionise healthcare 

The research revealed that the media primarily stresses the positive aspects of data in healthcare, while the criticism is mostly restricted to a few recurring themes, like privacy. Even though there are more societal issues at stake. We do not know, for example, how to best organise responsibilities in data initiatives.  

Slower developments in the healthcare practice  

Healthcare professionals are inspired by the dreams and work together with lawyers, technicians and ethicists to launch initiatives in healthcare organisations. For example, they create a prediction model that estimates the risk of adverse effects of medicines. This is often not easy to do. It takes a lot of time for all of the professionals to learn each other’s language and methods of working. They can only take tiny steps in turn, because they keep having to find solutions for the various legal, technical and ethical problems they encounter. This leads to such developments proceeding very slowly. 

Collaboration crucial for successful application of data in healthcare 

Marthe Stevens MSc suggested that we should be careful not to see dreams as reality. This leads to a tendency to over-regulation, unnecessary haste and restricted societal discussions. Instead, we should create conditions in which professionals can learn how data can best support healthcare and in which fields. It is important for different disciplines to come together for this, as that is the only way to properly weigh the various legal, technical and ethical dimensions.  

PhD student

Marthe Stevens MSc

More information

On June 4th, 2021 Marthe Stevens will be defending her thesis, titled “Dreaming with Data: Assembling responsible knowledge practices in data-driven healthcare”. Because of the COVID-19 pandemic there is limited availability to physically attend the defence in Erasmus University Rotterdam's Senate Room. Those who are interested, can attend the defence via a livestream, available through this link.

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