The hidden barrier to full human data integration: A joint research initiative by Pistoia Alliance and ZS
What would it take to fuel the future of R&D innovation through near-real-time integration of all dimensions of human health data? In this future, drug companies would leverage the full breadth and depth of human health data to develop new therapies faster, and healthcare providers (HCPs) would combine each patient’s complete health data with deeper disease understanding to offer truly personalized medicine.
To understand the feasibility of seamlessly fusing research, clinical and real-world data at a human level, the Pistoia Alliance and ZS conducted discussions with 25 industry leaders focusing on data and technology across R&D, including sponsors, regulators, patient advocacy groups, HCPs and health systems. This white paper is the result.
To our surprise, we learned that, despite pockets of progress, we’re farther from this vision than we initially believed. Interviewees expressed repeatedly that the technical challenges of integrating comprehensive health data are less daunting than the human and organizational ones, namely: misaligned incentives that discourage stakeholders from across the research, development and clinical ecosystem from making this integration possible.
The most frequently cited barriers include:
- Insufficient data standards (75%)
- Functional siloes (65%)
- Legacy systems (60%)
- Lack of incentives for collaboration (60%)
- Data ownership and FAIRification (50%)
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