Online health - too much information?

Give us one simple health dashboard

Logging on to your health records is a complex business

It seems like only yesterday that it was impossible to interact online with the health service. If you wanted to see your GP or get information out of your hospital consultant, you had to be prepared to spend plenty of time on hold on the phone listening to Vivaldi, or wait for a letter to land on the doormat.

All that has changed, and I find myself almost overwhelmed with information. First, and most usefully, there are the text messages from the GP and the two hospitals I visit regularly reminding me of upcoming appointments, or alerting me when I am eligible for vaccines.

Then there is my surgery’s online service provided by a company called Systm Online which, in theory, allows me to book appointments and repeat prescriptions and see my medical records. This works well for prescriptions but is pretty hopeless for appointments - I’ve just looked and there are no appointments available between now and March 7th, so it’s back to the telephone.

As for my patient record, there is a lot of detail about everything that has involved the surgery - results of blood tests, medication reviews - but nothing relating to my hospital visits, even when the consultant has written to the GP after an appointment.

Patients Know Best knows about my brain scan

I can find some of that information via a service called the Care Information Exchange - or Patients Know Best. This appears to be used by the Imperial NHS Trust which is responsible for my Parkinson’s treatment. Here I have found the letter my neurologist sent to the GP after an appointment last November. I have also just spotted the results of the 2019 brain scan that confirmed my Parkinson’s diagnosis - “there is significant loss of dopamine transporters bilaterally”, the report on the scan says.

Then there is a third source of online information about my care in the form of the NHS app, which was launched in 2018 but has acquired a new prominence since it became the home for Covid vaccination certificates. As well as allowing me to get on a plane, or into the Brentford Community Stadium, the app has my GP health record, with the same details of test results as Systm Online, and the same absence of information from my two hospital consultants. It also allows me to book repeat prescriptions and appointments at my GP - but, you’ve guessed it, none are available. What it does have is a far more attractive user interface than either Patient Knows Best or Systm Online.

The NHS app - for more than your Covid pass

But nowhere in this ocean of information is anything about my dealings with the excellent Moorfields Eye Hospital, where I’ve been treated for a malignant ocular melanoma for the last 17 years. Fortunately, the consultant writes a letter to my GP after every appointment and I get a copy through the post.

So there is plenty of information online but it is hopelessly haphazard and anything but joined up. And this has consequences. My eye consultant regularly reminds my GP that I need to have an ultrasound liver scan every six months. But nothing happens and there is no record of that request online. So I found myself last week walking to the surgery with a copy of the consultant’s letter to try to spur the GP into booking me an appointment for the scan at Ealing Hospital.

This week we learned that there is going to be yet another online platform, My Planned Care, which will give patients waiting for routine surgery information about their local hospitals and the waiting lists. So another destination for anyone trying to remember what is happening to their health care.

What we surely need is one simple dashboard where patients and their various doctors can enter everything they need to understand and organise their interactions with the NHS. Either the NHS app or Patients Knows Best could be the host for such a project.

The pandemic has accelerated the digitalisation of the health service and it feels as though there is plenty of enthusiasm among patients for the move online. Now, before the goodwill fades, we need to make this new world easier to navigate.