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Medicine’s culture of secrecy

Greater openness could protect patients

Artillery Row

Former nurse Lucy Letby used stealthy methods to murder seven babies and attempt to kill six more. We may never know the full toll. Reviewing the case, medical-legal spokespeople argued that no one piece of evidence was the clincher contributing to her conviction. Instead, multiple smaller pieces of evidence pointed to the 33-year old’s guilt.

Stuffed inside her girly pink diary, numerous scrawled admissions of “evil” and “I did this” seemed especially powerful given that Letby’s private journal was never intended to be seen. Aside from Letby’s private logs and jottings, other notes risk being overshadowed. The evidence held in the neonatal medical records offered some of the most critical evidence. Yet access to these records was hidden from investigators’ and even parents’ views for far too long.

Serious misconduct and malpractice can thrive where keen eyes and inquisitive minds are forbidden from probing records and asking questions. As an academic researcher who has published dozens of articles on medical records, in my scholarship I have argued information blocking is a gift to those intent on medical wrongdoing. Lack of transparency could only benefit Letby in her pursuit of heinous crimes. Yet managers at the Countess of Chester Hospital where Letby worked actively denied investigators access to clinical records. With this information hidden behind lock and key, experts were prevented from interrogating the quality of neonatal care.

With more eyes on the charts, the poisoning was spotted

When police finally obtained access to the records, a lab result objectively proved one of the babies had been poisoned with an injection of insulin. This piece of information was previously overlooked by a junior doctor, who was probably overworked and burnt out. With more eyes on the charts, it was spotted. Further probing revealed that another baby had been killed this way, too. Reviews of yet other babies’ medical records were less straightforwardly interpreted but strongly suggested intentional harms. One of the independent medical experts, Dr Dewi Evans, said, “Many of the notes were organised disgracefully.” He nonetheless confirmed there was sufficient evidence to identify medical misconduct which, combined with other findings, pointed toward the nurse.

Greater medical record transparency can help patients, clinicians and other third parties to identify and raise concerns. Routine lack of transparency is something most of us don’t even notice when it comes to our medical records. It’s how things are traditionally done in medicine. In a vestige of a paternalistic era in medicine, today most of us surrender agency to health professionals without even noticing.

In theory, we can get to read our records in the UK. Patients have a legal right to request access to information held by public authorities such as the NHS. In practice, this process is cumbersome and protracted. Clinicians are also within their rights to redact information, meaning full transparency is not guaranteed.

A very different value proposition is offered by online record access. Just like in banking, where consumers can log in and examine their immediate incomings, outgoings and general financial health, the idea is that patients can probe in real-time what is going on with their actual healthcare. Online record access means patients get to see what their doctors, nurses and other specialists have written about consultations or procedures, to probe test results or check lab results.

In other countries, web-based transparency is now routine. In the United States, it is legally forbidden for providers to block information. Patients and parents, and anyone else they choose to share their records with, can read their online clinical documentation. Similarly, in Sweden where I work, all adult patients can read their medical notes via a secure online national portal. Parents are also entitled to access their children’s health records until they reach the age of 13. In the region of Uppsala where my university is located, online record access was implemented starting nearly a decade ago

What happens when you offer patients online access to their records? Multiple cross-cultural studies show patients, parents and family members derive benefits including better understanding their care and, crucially, feeling more empowered in health interactions. (Yes, they do spot errors in their notes.)

A fully digitised NHS cannot come soon enough

Why aren’t we granted full online record access in the UK? It is partly because medical documentation in British hospitals is still not fully digitised, but it is also because doctors aren’t in favour of the idea. From the end of October 2023, as part of their new NHS England contract, general practitioners will be obliged to offer patients access to their electronic health records. The British Medical Association responded to the proposed contractual changes by threatening legal action. Staggeringly, in surveys I conducted, 60 per cent of British GPs reported patients will find “significant errors in their records”, yet only one in three said online access was a “good idea”. In English primary care at least, online access will go ahead as planned. However, there are no imminent plans to offer online record access in hospital care. A fully digitised NHS cannot come soon enough.

Transparency is also kryptonite to those who are intent on causing and covering up medical harm. Studies show wrongdoing is more likely to arise when clinicians work in isolation or operate in the shadows. Of course, people like Lucy Letby often try to falsify medical records — but they can’t falsify everything. When lab or test results are lodged, as this case demonstrated, there is very little that bad actors can do to cover their tracks. Even though access to health records won’t be useful in all instances of serious misconduct, transparency could disincentivise bad actors, or make it harder to get away with criminal activities.

Although we will never know for sure if online medical record access could have got Letby off the ward sooner, we do know that access to records empowers patients and families. In turn, access might have emboldened whistleblowers and ensured they were taken more seriously, sooner.

Sadly, we have seen Lucy Letby’s kind before. Convicted in 2000 of murdering 15 of his patients, former GP Harold Shipman is the most prolific serial killer in British history. How did Dr Amir Hannan, the newly appointed doctor, manage to build trust amongst patients in the very practice where Shipman previously worked? He chose to open online record access to his patients. Why? Because Dr Hannan had nothing to hide. He also recognised that his patients had everything to gain.

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