In 1988 I was diagnosed with a rare immune deficiency. It is the single most important thing a doctor needs to understand about my health if they are treating me. My GP, whose general practice looked after me since I arrived in Cambridge in 1986, made a note of this at some point in 1998.
A list of diagnoses is not available from the GP record system covering half almost half of England’s patients. I’m one of them. Instead the GP record system provides the NHS App with a list of GP appointments – 300 for me, over the decades – and I have to scroll past all of them to get to the one mention of this important diagnosis.
Patients Know Best has a diagnoses page for every patient, no matter what record system their GP uses. For me, the diagnoses page pulls out the diagnosis that my GP had noted in an appointment 37 years ago and shows it clearly in the diagnoses page. It also shows GP appointments for sequential history.
I can also add the more precise diagnosis that my hospital specialist confirmed in later years. My NHS hospital won’t release my data to the NHS App or to PKB. And I can’t add any data into the NHS App. But in PKB I can manually write down the information I learned over time as a patient becomes an expert in their condition. And I have direct control to share all that information with any clinician involved in my care at any point
PKB launches GP record support for all adults in England
This May, I’m proud that Patients Know Best launched integration with GP records systems across England. Any adult who logs into their PKB account using NHS login can authorise PKB to store a copy of the data the GP has released to the NHS App. Any adult in England can register free of charge for the PKB service at https://patientsknowbest.com/register .
After the next time you use NHS login to log into PKB, you will see this screen:
Here is a short ‘How To’ film to guide you through the process.
Our Product Manager, Sarah Stuffins, explains here how it works and why this is so important from her point of view.
In addition to claiming a copy of your GP record, you can also see any data our hospital customers have released to you. PKB is the only source of hospital medical records in the NHS App, including 20 million new test results every month. PKB also has data from non-NHS providers of care, and devices, and of course the patient. Seeing the combined data in the PKB web site is even better.
How are we able to do this?
This is all possible because NHS England operates in the public sector for the public interest. Since 2015, it mandated the GPs must release data to patients, and the suppliers of GP medical records must facilitate this. By contrast, private health care providers tend to lock down records, as do the software companies bought by NHS hospitals. NHS England did not accept this, and built the NHS App to build a minimum level of service free of charge and to commission advanced services from innovative software companies.
There are of course exceptions for public safety, such as protecting children’s privacy; or preventing vulnerable adults from accessing information that harms them. But overall, NHS England wants to make it easier for more patients to see more data.
PKB went through NHS England’s certification process for all GP systems. As experts in making medical records understandable to patients, PKB went further than any other previous system. And we will do more.
Share for your safety, save your GP’s time
I can share my medical record with others for my safety. For example, I can share it with my wife, who can get me safe treatment if I’m too ill to speak for myself. And she or I can share it with any doctor we want to, anywhere in the world. If I give a French doctor access, PKB adjusts its appearance to French, one of 22 languages it supports.
The NHS App does not allow a patient to share their record with others. You can ask your GP to share your record with another patient registered with a GP in England. But that takes up your GP’s time, and it only works for other patients.
This doesn’t just benefit your GP. For hospitals in England, up to 50% of their patients can be from outside the region, leaving them with no access to your data. You save them time and become a connected information hub for them as well.
What’s next?
We will keep improving how we show and explain your data from your GP. For example, we will chart your GP test results in addition to the NHS App’s tabular list. PKB can do this because the software interprets the text your GP releases to the NHS App.
First, PKB adds structure. For example, my GP’s medical records system only releases the text “Total white blood count 4.9 10*9 [3.9 – 10.2]” to the NHS App. My doctors trained me to understand this sentence means 4.9 is my result, and the normal range of 3.9 to 10.2, so that part of my health is fine.
PKB does that analysis for me automatically, converting text into structure. This means plotting the 4.9 on a graph, along with a bar of the normal range and a colour to tell me 4.9 is healthy. It also shows alongside other values of the white blood count so I can see the trend over time. We already do this structure for hospital results, you will see it later in the year for GP results.
PKB also adds codes. When the medical record has the sentence “Selective immunoglobulin M deficiency”, PKB matches it to the medical code “SNOMED: 190980000”.
If you’re nosey, you can see this code by clicking on the > sign
With this code, PKB will show clinical trials that match my illness. Once it knows of one, it can tell me about it in case I want to contact the researchers. I can ask them to take part in the trial, which is important for my rare disease as new treatments are being tested that could cure me.
PKB will also check for treatments I should ask my GP about; explain possible side effects of my current medications; and teach me how to get the most benefits and manage the side effects.
Our goal isn’t just to provide your data as a right, but to present it with the tools and information you need to understand and act on it. These are just the next set of ideas we are delivering. We have many more that allow patients to know best. We hope you like them.