NHS App breaking cancer diagnoses before clinicians

HSJ has identified multiple cases in which serious findings – including suspected cancer – were visible to patients in the app before hospitals or GPs had communicated the results in person.

Cancer Research UK has warned that some callers to its helpline are having cancer diagnoses explained to them after they struggled to interpret results visible in the app.

The NHS App – which was used in September by over 13 million people – allows patients to view their health record on their phone, including consultations, test results and referral information.

NHS England guidance states that positive test results, including a cancer diagnosis, may be withheld from a patient’s record to give clinicians time to contact them first.

It notes that, in some cases, patients may still see results before a clinician has made contact but that nurses or doctors should reach out as soon as possible.

Increasing anecdotal reports from both patients and clinicians suggest that results and referral letters are being automatically released through the NHS App before patients have been contacted.

Posts across specialist cancer forums, including those run by Cancer Research UK and Macmillan Cancer Support, show numerous users encountering scan results or oncology referral letters that indicate a suspected cancer diagnosis before receiving a phone call or appointment.

Caroline Geraghty, senior specialist information nurse at Cancer Research UK, told HSJ: “The Cancer Research UK nurse helpline has received calls from people asking our nurses to explain the results they see in their NHS App, and often our team need to explain they have cancer.

“There are widely known issues with patient portals, that need to be rectified.

“Receiving a cancer diagnosis can be one of the most difficult things someone ever has to go through and people should always receive health news like this with a clinician, alongside access to support.”

One senior local leader said a big reason for the problem is that people’s GPs are responsible for uploading documents to the App, but they are often unaware of whether hospital staff have spoken to the patient or not. Their organisation is seeking to encourage hospital teams to communicate to GPs. 

HSJ understands that most patient data is released in real-time to the NHS App, while a minority of more sensitive results can be delayed. However, this all depends on whether individual providers have chosen to switch on the delay.

Some experts told HSJ that, as NHS trusts battle to meet key waiting time targets for cancer care, patients should be able to access their results as soon as possible so they know what steps to take while waiting for clinical contact.

An internal evaluation by an NHS trust of the Patients Know Best platform also found that most patients preferred receiving results ahead of appointments so they could process the news at home and attend their consultation feeling prepared.

An NHSE spokesperson said: “NHS guidelines are clear that patients shouldn’t be receiving diagnoses for serious conditions through digital channels without adequate support or context.

“The NHS will continue to provide compassionate care and support from clinicians, as well as giving patients the option to access their test results through the NHS App or other channels where appropriate.”

Updated at  4.50pm on18 November with additional information