Rethinking healthcare data sharing for a more secure future

Data is often hailed as the “new gold” in healthcare. The healthcare sector generates an enormous volume of data annually—accounting for nearly 30% of the world’s total data creation, yet only about 2% of healthcare data is actively used. A staggering 97% of hospital data sits idle — untapped potential that could transform patient care, accelerate medical research, and strengthen public health.

For years, healthcare data sharing has been seen as the answer. At its simplest, data sharing in healthcare means the exchange of patient information, such as records, test results, and clinical data, between organizations to improve care or support research. And on the surface, the benefits seem clear: more coordinated care, fewer duplicate tests, faster research breakthroughs.

But in reality, traditional data sharing is risky, inefficient, and increasingly unsustainable. Privacy breaches, interoperability failures, regulatory complexity, and mistrust from patients and providers all limit the success of healthcare initiatives. The result? The promise of data-driven healthcare often remains out of reach.

That’s why it’s time to rethink the model. Instead of trying to “share” sensitive patient data, healthcare organisations can now achieve the same goals through secure data collaboration — which is essentially “sharing without sharing.” With technologies like data clean rooms, providers and researchers gain access to the insights they need, without losing control of the data itself.

This article explores why healthcare data sharing continues to fall short, and how moving beyond it to data collaboration can unlock better patient outcomes, faster research, and stronger trust in healthcare innovation.

Why healthcare data sharing was meant to work (but falls short)

The idea of healthcare data sharing took hold because, on paper, it seemed like the fastest way to unlock the value of patient data. If doctors, hospitals, and research organisations could freely exchange health records, medical histories, and test results, the logic was simple: care would become more coordinated, research would accelerate, and health systems would operate more efficiently.

On paper, data sharing looks like it should:

• Improve patient care through fewer duplicate tests and more complete health records.
• Encourage more effective collaboration between healthcare providers, reducing delays in diagnosis and treatment.
• Accelerate medical research, where large datasets could identify disease patterns or support precision medicine.

Yet for all these promises, the reality of data sharing has not kept pace. Sensitive patient data is fragmented across different systems, often stored in incompatible formats that make it difficult to combine. 

Strict data protection rules add heavy compliance burdens, while the risks of breaches or ransomware attacks make many care organisations reluctant to participate at all. Even when sharing happens, it is usually slow, incomplete, and confined to narrow use cases — falling far short of the sweeping vision of data-driven healthcare.

The lesson is clear: the model of traditional data sharing may have been well-intentioned, but in practice it cannot deliver the security, trust, or scale that modern healthcare demands. When the concept first took hold, more secure technologies simply didn’t exist in accessible, easy-to-use forms. Today they do, and that changes everything.

The trust gap at the heart of healthcare data

If the benefits of sharing health data are so obvious, why hasn’t it taken off at scale? The simple answer is trust.

Patients are not opposed to their data being used responsibly. In fact, studies show that 71% of the general population — and 81% of people with chronic conditions — are willing to share anonymized health data to advance research. The barrier is not willingness, but confidence that their information will be handled securely, transparently, and only for legitimate purposes.

Healthcare providers face the same dilemma from the other side. While they recognize the value of data-driven collaboration, many hesitate to share records because the liability falls on them if something goes wrong. A single breach, misused dataset, or misinterpreted regulation can damage public trust and reputations built over decades.

Regulators, meanwhile, have stepped in with strict rules such as GDPR and HIPAA to protect patients, but these frameworks often add layers of complexity that make sharing slow, costly, and unattractive. The result is a gridlock where everyone sees the potential, but no one feels secure enough to act.

This is why the challenge for healthcare is not really about sharing data. It is about establishing the trust required to use patient data responsibly, without exposing individuals, providers, or institutions to unnecessary risk. And solving that trust gap requires a different model altogether.

“Sharing without sharing”: the better model for healthcare data

If traditional data sharing is flawed, what comes next? The answer is not to abandon the vision of more connected, data-driven healthcare, but to change the model that underpins it.

That model is healthcare data collaboration. Unlike data sharing, collaboration achieves the same goals — improved patient care, accelerated research, and more efficient health systems — without forcing organisations to give up control of their data. Put simply, “sharing without sharing.”

Instead of moving sensitive patient records between hospitals, research institutions, or pharmaceutical companies, collaboration allows data to stay exactly where it is. Privacy-enhancing technologies such as data clean rooms make it possible for multiple parties to combine their insights, run advanced analytics, and even train AI models — all without exposing raw patient information.

This shift matters because it directly addresses the trust gap. Patients don’t have to worry that their records will be copied or sold. Healthcare providers no longer face the same liability if data is breached, because the data itself never leaves their secure environment. And regulators can be reassured that strict rules around privacy and compliance are being met by design.

In short, collaboration is not just a safer alternative to data sharing — it is the evolution of healthcare data use. It allows organisations to unlock the full value of patient data while ensuring privacy, security, and trust remain intact.

Proof that it works

Secure data collaboration is already transforming healthcare. Across hospitals, research institutions, and pharmaceutical companies, data clean rooms are proving that collaboration is possible without compromising privacy.

• IM Associates & oncology research
  Hospitals were able to connect datasets for oncology studies without ever exchanging raw patient records. By collaborating in a secure environment, they unlocked new insights into cancer treatments while maintaining full patient confidentiality.
  
• The SEARCH project
  Biomedical researchers from multiple institutions came together to develop AI-driven healthcare solutions. Instead of pooling sensitive data, each party kept its information secure while contributing to models that advanced diagnostics and treatment planning.
  
• iCARE4CVD & cardiovascular research
  Decentriq is supporting the iCARE4CVD consortium in securely analysing data from over one million cardiovascular disease patients. Bringing together 34 organisations across 12 countries and more than 50 datasets, the collaboration uses Decentriq’s encrypted clean rooms to generate faster insights into treatment and personalized care. This approach has reduced IT setup time by 66% while ensuring strict privacy compliance.

From risk to resilience in healthcare data

For too long, the debate around healthcare data has been stuck in the same loop: how do we share more, while leaking less? But maybe the better question is this: why are we still trying to share at all?

This is the mindset shift the sector needs. Healthcare data sharing is risky and outdated. The organisations that will lead the next decade of healthcare innovation are those that stop treating data as something to give away and start treating it as something to collaborate on without compromise.

This is why Decentriq was built: to replace data sharing with a model that makes sharing obsolete. To help the healthcare industry turn untapped data into insights and discoveries, without ever losing control of it. 

If your organisation wants to collaborate without compromise, Decentriq makes it possible. Learn more about data clean room solutions for healthcare here.

Download our whitepaper, "Unlock the Value of Real-World Healthcare Data with Confidential Data Clean Rooms," for a deep dive into the topic.

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