The Human Impact of Data Breaches in Healthcare: Lessons in Trust and Design

When a healthcare system breaches your trust, it’s not just about data—it’s about privacy. Patients rely on these systems to protect their most personal information, and when that fails, the impact is deeply felt.

Data breaches in healthcare are more common than many realise. In the two years leading up to March 2021, 3,557 personal data breaches were reported across the health sector in the UK, with the NHS accounting for the majority. Globally, events like the WannaCry attack disrupted over 19,000 patient appointments, delaying care and eroding trust.

Take this patient's experience:
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"The NHS app linked to someone else’s health records—again. It’s been a nightmare to resolve, with sensitive data breached and no clear answers yet about how it happened or if anyone accessed my medical records. This is the second time, first in December 2021 and now again this summer. To ensure no data merged, I filed a Freedom of Information request to check my full medical record.

The worst part is my GP surgery is pushing for NHS app use, leaving me forced to rely on something I’ve completely lost trust in."

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This is not an isolated incident. Breaches like these remind us why trust is the cornerstone of healthcare. They challenge us to go beyond compliance and rethink how we design systems to protect, reassure, and empower patients.

The Human Toll of Data Breaches

Data breaches aren’t just technical slip-ups—they have real consequences for people’s lives. Patients experience:

• Anxiety and Vulnerability
  When health information is mishandled, it leaves patients feeling exposed. It’s not just about privacy—it’s about control. Imagine someone discovering that details about their mental health or treatment history could be in the wrong hands. It’s unsettling, creating constant worry about who might have seen their information and how it could affect their life.
• Frustration and Helplessness
  Fixing the problem is rarely straightforward. Patients are often left navigating confusing processes, trying to get answers or even basic reassurance. A simple mistake in the system can mean hours on the phone, filling out forms, or chasing responses that never come. It’s exhausting and leaves people feeling like no one is truly accountable.
• A Loss of Confidence
  When mistakes happen more than once, it’s hard for patients to trust the system again. They might avoid using online health tools altogether, even if those tools could make their care more convenient or accessible. For some, it feels like the only way to protect themselves is to step away from the very innovations designed to help them.

Every breach impacts not just systems but individuals, underscoring the need for systems designed to maintain trust, even in exceptional circumstances.

The Role of Human-Centred Design in Building Trust

Human-centred design offers ways to support in addressing these challenges in ways that are empathetic, transparent, and focused on the patient experience. It’s not about starting from scratch but about continuing to evolve alongside patient expectations. Key principles include:

• Transparency
  ‍Ensuring patients understand how their data is managed and why they can trust the system.
• Empathy in Communication
  ‍Designing clear and supportive messaging that reassures patients, especially during incidents.
• Adaptability
  ‍Using real-world feedback to iteratively refine systems, making them more intuitive and accessible over time.

Looking Ahead

Healthcare systems like the NHS app play a vital role in transforming care, making it more accessible and efficient. The complexity of these systems means challenges are inevitable, but they also represent opportunities to further embed trust through design. By continuing to prioritise human-centred design, healthcare systems can ensure they meet the needs of patients today while remaining adaptable to the challenges of tomorrow.

Data breaches in healthcare go beyond technical failures—they’re moments where trust and privacy are tested, and too often, they’re lost. Designing for trust means putting people at the centre of every decision. By embedding transparency, resilience, and empathy into digital systems, healthcare organisations can rebuild confidence and ensure their services truly serve the people who rely on them.