Nhs Patients Should Be Able To Write Up Their Own Medical Records – And Not Have To Rely On Post-it Notes | Will Parman

As she battles cancer, my mum fears that she will hide to show her advisor thing important. Like galore group pinch analyzable and chronic wellness needs, she clutches a Post-it statement pinch 10 bullet-pointed symptoms, specified arsenic “cannot stand” and “spasms”. It is her companion during stressful appointments. We rehearse her database earlier we enter, and interest that we deviated excessively overmuch erstwhile we leave.

Even then, her peer-reviewed lists, sometimes connected nan backmost of envelopes, are inadequate erstwhile her information whitethorn alteration time to day. Each list, too, must beryllium tailored for each of her consultants – galore lists get mislaid successful her gangly heap of notes and letters. I dislike those car rides location erstwhile we’re upset that we didn’t opportunity thing important, fearing nan consequences of this omission. In a wellness strategy successful which group tin wait much than a year for an appointment, you wonderment really meticulous these Post-it notes request to beryllium to convey each alteration successful their aesculapian information since nan first referral letter. It raises nan mobility of really galore group person knowledgeable this unsettling thrust home.

Throughout my mum’s crab treatment, nan NHS has been awesome and I person a typical gratitude for each nan staff, arsenic good arsenic for those astatine nan the crab kindness Macmillan, who person made our uncertain lives bearable. However, connection is basal passim nan curen process, truthful it troubles maine erstwhile it breaks down.

This breakdown is evident successful 1 2025 study from Healthwatch England, successful which 23% of patients reported noticing inaccuracies successful their NHS aesculapian record; of these patients, only 17% said nan errors had not impacted them. Now that AI is progressively trained connected diligent data to amended NHS efficiency, accuracy is much important than ever to safeguard patients’ outcomes. Our interest astir nan safe transportation of my mum’s analyzable history from Post-it to aesculapian statement is, therefore, not unfounded. Surely, location must beryllium a amended way.

What if patients had a unafraid measurement to upload their slug points earlier their appointment? What if they had nan aforesaid aft nan assignment arsenic good – for nan slug points forgotten, and for nan points raised during nan consultation that require further clarification? Such a strategy would beryllium voluntary, low-commitment and safe.

So why don’t we do this already? In nan US, specified a system, called OurNotes, has been introduced to awesome effect. Patients co-author their aesculapian grounds by submitting an “agenda” and a little “interim history” earlier appointments. In a follow-up study of doctors crossed 74 clinics, 97% described agendas and 93% described interim histories arsenic “good ideas”. In addition, 35% of these clinics believed co-authoring notes really “saved time” – truthful they’d beryllium improbable to further load an already overwhelmed NHS.

OurNotes is simply a awesome start, but it still doesn’t resoluteness nan difficult car rides location erstwhile important accusation has been overlooked. If co-authoring useful beforehand, I spot nary logic for it not to activity aft appointments, too. This is peculiarly important erstwhile doctors interrupt their patients connected mean aft 11 seconds, making it challenging to afloat sound each concerns and explain them during consultations. Uploading a general grounds of slug points would springiness patients specified arsenic my mum a sound successful scenarios wherever empathic listening is limited. This is not a disapproval of doctors, but simply a reflection of NHS pressures.

Coroners many times pass of patients dying because of complications pinch nan sharing of important aesculapian accusation betwixt professionals. This is simply a consequence of each NHS work utilizing its ain eclectic scope of systems that cannot stock accusation effectively. The UK authorities attempted to reside this systemic fragmentation done nan failed £10bn National Programme for IT (NPfIT) programme, which sought to create a unified nationalist grounds system, but became “one of nan worst and astir costly contracting fiascos successful nan history of nan nationalist sector”, according to an MP connected nan nationalist accounts committee.

Both Wes Streeting’s three-point plan to modernise nan NHS and nan NHS Spine infrastructure’s advancements successful internal messaging systems betwixt professionals activity to reside coroners’ concerns by digitising unit communications. But nan NHS is many times marginalising patients by not adequately acknowledging their reliance connected Post-it notes. Streeting’s connection to present “patient passports” to clasp unified aesculapian records remains highly controversial, pinch valid concerns regarding information security, nan fostering of a “big brother” authorities and nan trading of diligent data.

Proposals to digitise nan NHS are vital, but astatine a clip erstwhile public restitution successful nan NHS is astatine a grounds low, they must not travel astatine nan disbursal of patients’ voices. The NHS is now trialling Cancer 360, a centralised strategy intended to velocity up crab treatment for patients by collating diligent accusation from spreadsheets, emails and records into a azygous integer system. This is simply a important advancement successful crab care, and 1 that will prevention lives. Yet it still fails to admit patients specified arsenic my mum who get clutching Post-it notes. Once again, she is denied authorship wrong her ain curen plan. Again, nan US whitethorn connection a solution.

After 9/11, nan US intelligence organization acknowledged that, had key accusation been shared betwixt agencies, “the onslaught would person been prevented”. Like NHS trusts, US agencies each usage abstracted systems and person their ain impermeable bureaucracies. An unorthodox solution, Intellipedia, was launched successful 2006 to forestall early missed opportunities by sharing intelligence crossed authorities agencies. It celebrates its 20th day this month. Inspired by Wikipedia, it lets agencies collaborate to create and dynamically edit pages that see top-secret accusation applicable to nationalist security.

Intellipedia’s solution avoids nan pitfall of NPfIT by offering an established exertion designed to coexist pinch divers soul systems. It could supply a centralised but abstracted and unafraid repository for patients and professionals to upload their notes successful a measurement that is workable and inherently collaborative. An NHS Intellipedia could springiness millions of patients, including my mum, a due sound successful their curen and extremity Post-it statement civilization for good.

• Will Parman is nan victor of nan The Guardian Foundation’s 2026 Emerging Voices grant (19-25 property category), recognising young talent successful governmental sentiment writing