Data silos hold back Irish clinical research
By April Lara
June 20, 2024
Patient healthcare data
Ireland's research potential faces a critical hurdle: fragmented IT infrastructure. Data is currently trapped in isolated systems across institutions, hindering collaboration and progress. Professor Frank Sullivan, chief medical officer of Whyze Health, highlighted this issue at the recent IPHA Forum: Untapped Potential: Rethinking Ireland's Approach to Clinical Trials.
"I think that's one way we can make some real gains very quickly here," Professor Sullivan said. "Making the data available in a more usable fashion, ending the silos within hospitals for example," he said.
This has long been a problem. Ireland's clinical research infrastructure was falling behind, according to a 2019 review by the Health Research Board. The review identified gaps, duplications and unmet needs in the current system.
Highlighting the issue in April this year, the minister for health, Stephen Donnelly, acknowledged Ireland's status as a "laggard" in clinical trials. This multi-pronged problem–siloed data creates a triple threat to clinical research:
- Limited access frustrates researchers
- Fragmented datasets hinder groundbreaking discoveries
- Collaboration challenges slow down progress.
Building a solid infrastructure
A pilot project called Data Access, Storage, Sharing and Linkage (DASSL) has provided valuable insights, but a more comprehensive approach is needed to build a truly robust research IT infrastructure in Ireland. DASSL serves as a springboard, demonstrating secure data linking methods and informing national data governance frameworks.
This need for interconnectedness is echoed by Sullivan, who highlights a key issue: "One of the key issues for us would be the interconnectedness of the systems themselves. They're very much siloed and it's about how we link things a lot better."
He claimed that one effective way to do this is to look at the data at a national level. Establishing national standards for data management and implementing clear data governance frameworks will ensure data compatibility, seamless integration, and responsible management practices. These are all essential for breaking down data silos and empowering researchers across all fields.
Siloed IT infrastructure creates a maze for researchers, limiting access to data and hindering collaboration. Plans are in motion to address these challenges, but a key question remains: How can Ireland best break down these data silos and build a future-proof research IT infrastructure?
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