NHS patients should be able to write up their own medical records – and not have to rely on Post-it notes | Will Parman

AAs she battles cancer, my mother worries she’ll forget to tell her consultant something important. Like many people with complex and chronic health needs, she holds a Post-it note with 10 symptoms, such as “can’t stand” and “spasms.” It’s his companion during stressful meetings. We repeat his list before entering and fear straying too far when we leave.

Even then, his peer-reviewed lists, sometimes on the back of the envelopes, are inadequate when his condition can change from day to day. Each list must also be tailored to each of his consultants – many lists get lost in his large pile of notes and letters. I hate those car rides home where we are upset that we didn’t say something important, fearing the consequences of doing so. In a healthcare system where people can wait more than a year for an appointment, one wonders how meticulous these post-it notes must be to convey every change in their health since the initial referral letter. This raises the question of how many people experienced this unsettling return home.

Throughout my mother’s cancer treatment the NHS has been wonderful and I have particular gratitude for all the staff, as well as those at the Macmillan cancer charity, who have made our uncertain lives bearable. However, communication is key throughout the treatment process, so it bothers me when it breaks down.

This distribution is apparent in a 2025 study by Healthwatch England, in which 23% of patients said they had noticed inaccuracies in their NHS medical records; of these patients, only 17% said the errors did not affect them. Now that AI is increasingly being trained on patient data to improve the efficiency of the NHS, accuracy is more important than ever to safeguard patient outcomes. Our concern about the safe transfer of my mother’s complex history from Post-it note to medical document is therefore not unfounded. Surely there must be a better solution.

What if patients had a secure way to download their chips before their appointment? What if they also had the same after the appointment – ​​for forgotten bullet points and for points raised during the consultation that need further clarification? Such a system would be voluntary, minimally restrictive and secure.

So why not do it already? In the United States, such a system, called OurNotes, has been introduced to great effect. Patients co-author their medical records by submitting an “agenda” and a brief “interim history” before appointments. In a follow-up study of physicians at 74 clinics, 97% described the programs and 93% described interim histories as “good ideas.” Additionally, 35% of these clinics thought co-author notes “saved time” – so they are unlikely to place any further strain on an already overwhelmed NHS.

Our Notes are a good start, but they still don’t solve the difficult car ride home when important information has been overlooked. If co-creation works beforehand, I see no reason why it should not also work after the meetings. This is especially important when doctors interrupt their patients after an average of 11 seconds, making it difficult to fully express all concerns and clarify them during consultations. Uploading a formal microchip recording would give patients like my mother a voice in scenarios where empathetic listening is limited. This is not a criticism of doctors, but simply a reflection of pressures from the NHS.

Coroners repeatedly warn of patients dying from complications related to sharing crucial medical information between professionals. This is because each NHS service uses its own eclectic range of systems which cannot share information effectively. The UK government attempted to address this systemic fragmentation through the failure of the £10 billion National Program for IT (NPfIT), which sought to create a unified national registration system, but which became “one of the worst and most costly contracting fiascos in the history of the public sector”, according to an MP on the Public Accounts Committee.

Wes Streeting’s three-point plan to modernize the NHS and NHS Spine infrastructure advances in internal professional-to-professional messaging systems seek to address coroners’ concerns by digitizing staff communications. But the NHS regularly marginalizes patients by failing to adequately recognize their reliance on post-it notes. Streeting’s proposal to introduce “patient passports” to keep unified medical records remains extremely controversial, with legitimate concerns over data security, the promotion of a “big brother” state and the sale of patient data.

Proposals to digitize the NHS are essential, but at a time when public satisfaction with the NHS is at an all-time high, they must not come at the expense of patient voices. The NHS is currently trialling Cancer 360, a centralized system to speed up cancer treatment for patients by bringing together patient information from spreadsheets, emails and records into a single digital system. This is a significant breakthrough in cancer treatment that will save lives. Yet he still fails to recognize patients like my mother who arrive with post-it notes in hand. Once again, he is denied authorship of his own treatment plan. Here again, the United States could offer a solution.

After 9/11, the U.S. intelligence community acknowledged that if key information had been shared between agencies, “the attack would have been avoided.” Like NHS trusts, US agencies each use separate systems and have their own impervious bureaucracies. An unorthodox solution, Intellipedia, was launched in 2006 to prevent future missed opportunities by sharing intelligence between government agencies. She is celebrating her 20th birthday this month. Inspired by Wikipedia, it allows agencies to collaborate to dynamically create and edit pages containing top secret information related to national security.

Intellipedia’s solution avoids the NPfIT pitfall by offering established technology designed to coexist with various internal systems. It could provide a centralized but separate and secure repository for patients and professionals to upload their notes in a convenient and inherently collaborative way. An NHS Intellipedia could give millions of patients, including my mother, a proper voice in their treatment and end Post-it culture for good.

• Will Parman is the winner of the Guardian Foundation’s 2026 Emerging Voices Award (19-25 age category), recognizing young talent in political opinion writing.

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