Structural challenges in accessing and using big data in health care: A case study based on palliative care research

Big data holds transformative potential for health research, yet accessing and utilizing it remains challenging. Based on firsthand experience, this study identifies structural challenges and proposes ways to improve data accessibility and usability.

Using a case study within the PhD project DepEnD (Deprescribing at the End of Life), we analysed two data requests at the national level: Cohort 1, linking Belgian health insurance data with data from Statistics Belgium, and Cohort 2, with the Belgian Resident Assessment Instrument (BelRAI). We conducted document analysis included email correspondence, meeting minutes, and data application and approval documents. The entire trajectory from data request preparation to acquisition and use was mapped and illustrated with timelines. Challenges related to access and use were analyzed thematically.

We reviewed 111 emails, 19 meeting minutes, 20 documents submitted to the Belgian Information Security Committee (ISC), and 2 ISC-authorized documents. The process from document preparation to data access took 3.5 years for Cohort 1 and 20 months for Cohort 2. Delays stemmed from multiple parties involved in data sharing and authorization. These challenges fell into five key themes: 1) bureaucratic, procedures and regulations with substantial human dependency; 2) limited personnel capacity; 3) data quality and accuracy issues; 4) operational and technical problems; and 5) lack of clear responsibility and coordination throughout the data-sharing lifecycle.

Accessing big data was not as straightforward as anticipated; the process involved significant delays, complexity, and high costs. These challenges compromised timelines, narrowed research scope, led to inefficient use of public funds, and risked the completion of time-bound projects. Streamlining access is therefore essential and should be a priority. Based on observed challenges, we propose solutions focusing on strengthening data infrastructures, harmonizing data access procedures through clear protocols, building adequate personnel capacity, establishing jointly agreed timelines, and enabling fast, transparent communication among stakeholders.