Patients Know Best - A Quiet Data Revolution
Why patients need their data even if they don't understand it
It was in the middle of my nightmarish experience trying to get treatment for my fractured elbow that a lightbulb went on. What I desperately needed was access to my health records to find out what was going on. I was vaguely aware that the NHS app gave me some data and was pleased to find a discharge letter from Ealing Hospital through it hours before a paper version was delivered - but I wanted far more. Now, after a conversation this week, I know that a lot of my data - from tests and scans to GP records - was buried in the NHS app all the time.
Most of it was provided by Patients Know Best, an organisation which has been on a mission since 2008 to give patients more control over their own health records. My conversation was with its CEO Muhammad Al-Ubaydli who told me the idea was born out of his experience as a child with a genetic immune deficiency treated by Great Ormond Street Hospital where doctors taught him to inject himself and gain control of his treatment. “They spent a lot of time, bless them, trying to get me independent and able.”
He ended up training as a GP, then dedicating himself full time to the idea that patients like me really do know best - or will do if they are armed with the information they need. “My job is to get you to a situation where you do know best because I've given you your data and I've connected you with your providers and your loved ones so that together you can come to a better understanding of what needs to be done.”
For years it was very slow going with the idea of putting the patient in charge proving unattractive to many in the health service:"Most providers at core are frightened by the idea of the patient having the data,” he says. “They think that the patient's going to spot their mistakes and get angry at them as opposed to the patient's going to fill in the gaps and work with them.”
A big breakthrough came with a deal covering patient records in hospitals and GP surgeries in North West London - fortunate for me as that is where I live. But patients still had to know about the idea and then sign up to access their data and with few doctors actively promoting the service, only a few thousand came on board in the first three years.
It took the pandemic to, in Dr Al-Ubaydli’s words, “take the hand brake off”. At first it seemed that a plan to integrate Patients Know Best into the NHS app would be frozen - then the realisation that people with conditions like cancer and diabetes would not be coming to hospital but would be eager for more information saw it accelerated. The fact that the app with its Covid pass became essential for travel led millions to download it and when they explored what else it could do they found out about Patients Know Best. Nearly 3 and a half million have signed up and another 100,000 join each month.
As we talked, I scrolled through the NHS app and was reminded that if you battle long enough with the clunky interface you can now find quite a lot of information. There are reminders of forthcoming hospital appointments and if, as I am, you are a customer of several hospitals it is handy to have them in one place. So I could see my upcoming dates with the fracture clinic and my next meeting with my Parkinson’s consultant in July 2024 - but sadly my regular appointment at the Moorfields oncology clinic which I have been visiting since 2005 was not listed as the eye hospital does not appear to have signed up with the service.
But what I also found was the results of tests or scans I have had done over the years, and I immediately zeroed in on what seemed like dozens of blood tests, x-rays and CT scans carried out in Ealing and Northwick Park hospitals after the accident where I fractured my elbow.
Here, I began to sympathise with those doctors who fear giving patients raw data without explanation could leave them confused and worried. I could not comprehend for instance the meaning of “mean corpuscular haemoglobin time”, one of the many tests from a sample of blood taken when I was admitted to Ealing Hospital and prepared for surgery. Far more interesting was the CT scan of my elbow - but that was labelled “available November 14th” four weeks after the image was taken, and as I scrolled through other scans the same delay applied.
Why wouldn’t such vital infomation be available to the patient immediately - as the incomprehensible blood tests were? Muhammad Al-Ubaydli had a good explanation - there was a blanket delay on results of scans and biopsies which might point to a serious diagnosis such as cancer so that the patient did not get frightening news before they meet the doctor.
When my CT scan result did become available a few days later, it was very useful. The radiologist notes the presence of “soft tissue gas” and goes on to ask “is this an open injury?” I then found among the many documents on the app the discharge report from the night of my accident a few days earlier when a decision was made to send me home from the hospital at 3.30 am on Saturday. The report says “home with fracture clinic follow up and analgesia” but makes no mention of this being an “open” fracture.
I now understand how serious a mistake it was to send me home with an open wound with no antibiotics. The “soft tissue gas” spotted in the scan a few days later could have been the start of a very dangerous infection. While I don’t think I would have had the energy to fire up the NHS app while lying in a hospital bed or been able to grasp the significance of what the records said, I do think my experience shows the value of giving patients access to their data. Without it, you are ill prepared to have an informed discussion about your case with medical staff.
Patients Know Best seems to me an exciting project but very much a work in progress. Eventually Mohammad would like to connect the service with health monitoring apps so that it collects new information as well as displaying exisitng data. As an example he says my phone could monitor my changing voice and so track the progress of my Parkinson’s.
But for his vision to be realised there needs to be a change in mindset amongst many healthcare professionals, a willingness to share data and collaborate with patients rather than keep them in the dark. Patients Know Best is being supplied free to 12 medical schools - the hope is that a new generation of doctors will learn that sharing information is not as scary as their predecessors thought.
In France, patient held records are the norm. Everything from blood results, x rays to scans. And most results are given to you after your appointment, or you wait until they are ready. Blood tests done at lab first thing, and emailed to you in the afternoon. It is the patient’s responsibility to take them to relevant appointments e.g. consultants. It does provide some storage challenges, for x rays in particular.
The cultural shift required by the medical profession includes writing letters directly to the patient. If the doctor writes directly to the patient there’s no excuse for not explaining what is going on and what the test results mean. Copying the letter that’s written to the GP to the patient is not the same thing. Phrases such as “I saw this pleasant lady in clinic today...” make me cringe!