185 General discussion infrastructure, which was not readily accessible for research purposes at the time. This fragmentation – where collections of data are scattered across various locations, resulting in numerous datasets distributed across multiple servers – hinders the possibility of interconnection and smooth exchange of data, but appears to be not unique concerning our study.19 Furthermore, the original idea for this study was to enrich our datasets – containing information on individuals’ participation status and cancer incidence rates – with supplementary data from Statistics Netherlands (CBS; Centraal Bureau voor de Statistiek) to obtain a more comprehensive understanding of determinants affecting cancer screening attendance. Unfortunately, not all parties involved agreed to share their data, so we were not allowed to set up straight forwardly pseudonymized data linkage procedures as we had originally planned. From literature it appears to be a recurring challenge in Dutch studies, where data linkage problems appears to be commonly encountered.20, 21 The General Data Protection Regulation (AVG; Algemene Verordening Gegevensbescherming) is then mostly cited, which would not allow re-use and/or data linking.21 This is regrettable, since from the perspective of (I) the patient, (II) the researcher, (III) the quality assessor, but also (IV) the healthcare professional, there are multiple arguments why linking, sharing and re-using of (medical) routinely collect data is desirable.22 With regard to the data retrieval and linkage issues, the Netherlands underperforms when compared with other countries in Europe.23, 24 For patients, sharing of data would contribute to better individual care, as in this way, all caregivers involved are aware of the patient’s latest condition. Patients are often convinced that every healthcare provider is aware of their complete medical record (even between different healthcare institutions or during out-of-office care) and are surprised when this turns out not to be the case. For researchers and quality assessors, linking, sharing, and re-using of data would offer them a chance to gain clearer insights into care processes. For healthcare professionals, the linking, sharing, and re-using of health data would allow them to provide better care and probably saves a lot of frustration. Due to overinterpretation of privacy rules patients may encounter health care providers who do not have access to medical records others produced and are therefore not aware of a patients’ medical history, which is not desirable. An illustrative example demonstrating the benefits of reutilizing existing routine collected data in a smart manner, is the recently released atlas by the Netherlands Comprehensive Cancer Organisation (IKNL; Integraal Kankercentrum Nederland) that provides insight into incidence rates of certain tumours in certain areas in the Neterlands.25 This is actually what we also had in mind with the sub-study described in Chapter 3, but then with a focus on the different neighbourhoods in the city of The Hague. In an ideal world we would redo the study described in Chapter 3 with a pseudonymized individual procedure that links the cancer registry data, to data of Statistics Netherlands and routinely collected 7
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