Fig. 3.

Implications of the four different approaches presented in Fig. 2 for the different stakeholders: the patient, user, and data owner. The more a bar is filled, the better the approach is for the stakeholder. Ratings are subjective; therefore, interpretations can differ. The patient benefits most from approach D, as cloud computing is the most secure option, minimising the risk of a patient’s sensitive data being leaked. Also, it is the most transparent, as all activities related to the data can be monitored. Furthermore, its sustainability makes it ideal for users. However, not only the quality of the data is essential for the user, but also its usability. Therefore, users might prefer approaches A and B since these are easy to use and relatively sustainable, data quality of approach C can be worse since it is fully anonymous and cannot easily be enriched, making it less useful for the user. The data owners are responsible for building and maintaining the database. Consequently, approach A is the least preferred option, as consent can be challenging and time-consuming to implement. Approach C might also not be preferred because the anonymisation process can be difficult and database updates even harder. Approach B is already much better for the data owners due to its sustainability; however, it can be hard to implement legally. Although approach D is arguably the most challenging to implement for the data owner, we still expect this is the preferred option as it offers the most control over the database and its use. Furthermore, the cloud computing infrastructure can be used for many different data sets, meaning that it only has to be set up once and can be maintained for all shared data sets.