NHS health records, a better way


If you have ever been in an NHS hospital the chances are the hospital wont have had access to your medical record at some point, especially if you have moved around. This will have created problems some of which you will see, some of which you wont.

This is certainly true for myself. I was born and raised in Bolton, spent a lot of time in and around Salford / Manchester, before moving to London and today I live in Oxfordshire, as well as being taken ill when away from home.

As someone with a long term condition I sometimes present to A&E with problems. To date, every time it has happened it has been a different hospital and every time they don't have access to my  records.

The default reaction is to ask me to recount my medical history from 1980 through to today, run a series of tests, wanting to admit me and generally wasting a lot of time and resources, meanwhile delaying the course of treatment which I already know I need, and which will allow me to go home within a number of hours.

Even with planned care when I went for a routine investigation I was told "it would just be easier to do another x-ray" than try to access my previous x-ray.

So much for "first do no harm".

What can we do about this today?


I thought a one page summary would be useful so I contacted my GP and asked them if they could create this, I even offered to write the first draft.  This created more problems and the abhorrent attitude of my GP practice will be the subject of a future blog.

Anyway, I decided to take matters in to my own hands.

Most people don't realize that everyone has a legal right to a copy of  all information an organisation has about them, including the NHS. GPs have even been contractually required to provide online access since 2016 but as far as I can tell most don't promote this and some even seem to  actively discourage it.

You can contact most hospitals via email (sometimes it's easier to go through the PALS service) and ask them to send you a copy of your record and they must do this within 40 days.

In my experience most NHS organisations will make a dogs dinner of this process. From ignoring you altogether, to refusing to email on the grounds of "security". I've heard most of the excuses all of which to date have been misinformed claptrap.

Of course it is important to safely identify the patient and obtain consent to share the information using whatever means however, beyond this there are no restrictions. NHS organisations who refuse should be challenged and, where necessary complaints escalated to the Information Commissioners Office.

I cannot imagine how the average patient finds their way through this quagmire of misinformed data protection rhetoric but, if you do this is not the end of the problem.

Hospitals can then charge you a "reasonable" fee, which is often very expensive (up to £50).  For myself and many like me who have records with many organisations the costs quickly run in to the £100's.

So far most hospitals I have dealt with in someway breached data protection law. Having formally complained and pointed this out, I have suggested they may want to waive the fee as a gesture of goodwill. So as painful as they have made the whole process it has sort of worked in my favor, although I feel older and grayer for it.

All this non-sense is bad for patient outcomes and the NHS. It's time for a change in culture and mindset. We need to adopt some better practices.

A better way


If the NHS moved to a position of routinely giving information to patients and made the process easier we would all benefit. Indeed good practice is to copy patients on correspondence, so why not their record too?

Email has been around for over 3 decades and the NHS has had a national email solution accessible to all NHS organisations for over a decade.

I'm not suggesting this is the best solution but today every organisation could ask patients if they would like to receive a copy of their record. At a suitable point (perhaps the end of an encounter), a copy could be sent by email assuming this is what the patient has consented to. 

For the few patients who don't use email but want to engage, paper and post is still an option.  Simply having a file you carry is still a long chalk better than having nothing!

To date for me personally this would have:
  • Provided a complete and longitudinal care record.
  • Helped my understanding and communication.
  • Prevented an unnecessary x-ray
  • Prevented a mix up with another patient and a wasted barium swallow x-ray appointment.
  • Prevented another mix up with someone else's pre-op appointment.
  • Allowed me to have been treated and discharged faster on at least 2 occasions.
I'm sure you'll be delighted to hear I will be blogging about some of this and many other of my experiences in the future.

I don't believe I am a special or unlucky case. I  am confident this is going on every day in the NHS. Therefore, if a small percentage of people became more engaged in their healthcare and had routine access to their records we would start to see benefits very quickly.

Of course we can do a lot more with technology but this will take time, meanwhile patients and the NHS are suffering, so we must be agile in our approach and take action now using readily accessible means.

The US Open Notes programme has been giving records back to millions of patients for some years. Their study has shown the benefits and debunked all the myths and rhetoric many times over, yet I still hear this within the NHS bubble.  Open Notes has even looked at more complex scenarios such as mental health and providing notes to doctors at the same time as patients without any delay.

The simple act of having your record improves healthcare, and when asked 99% of patients wanted to carry on with the service and 100% of doctors did. 

Why are we procrastinating in the NHS?

Going beyond today


There are no legal, policy or technical barriers to improving the current state of affairs overnight, however there is a great deal of variation & interpretation within the NHS not to mention the egos and the politics.

The EU GDPR (General Data Protection Regulation ) is seeking to harmonize data protection laws across the EU and yes, this includes the UK, Brexit or otherwise.

GDPR will give citizens even greater rights when it comes to how our data is used and accessed. This is great news for patients and the NHS if implemented well.

Not only will we have a right to access our data as before but with the new data portability requirements our data must be available for free AND in a common machine readable format. This is brilliant news for anyone who wants their medical records on the go, such as on their mobile device.

My worry with all of this that there is very little National in our NHS. Right now there are literally 100's of Record and Information Governance departments across the NHS interpreting GDPR, inventing processes, forms and access mechanisms for data.

I guarantee every branch of Tesco isn't doing this independently.

I worry we will end up with the same hodge-podge of systems and processes to access our data and it won't  be scaleable or cost effective, let alone easy for patients to navigate. As for routine access, sadly I hear no talk of this beyond simplistic GP record access.

Back to our friends in the US who are already going beyond GDPR. New US regulations will require hospitals to do more than provide outdated emails, portals and data downloads. In 2018 US hospitals will be required to make APIs available to patients.

APIs are a programmatic means to access data which make it easier for apps and services you choose to connect to your data. Think of facebook and their rich eco-system of apps. This is all enabled under the hood by APIs which, for the most part are transparent to the user.

This approach empowers individuals with their data and enables industry and innovators to provide services directly to them. No more silos, vendor lock in or slow and bureaucratic processes, we will be liberating patients and their data, unlocking a whole world of potential, especially when it comes to research, innovation and self care.

The forward thinking hospitals in the US are already getting ahead and have made this functionality available to patients. The US market leading software vendors (such as Cerner, Epic, etc.) not only already have this capability but are also already used here in the NHS today.

If we don't get GDPR right we will once again fail to future proof the NHS. In turn we discriminate against and alienate today's digital natives and we will fail generations to come.

The NHS needs to go beyond thinking of GDPR as a compliance problem and think of it as an opportunity to enable patients and the NHS to do more with less.

Final thought


For me this goes beyond data protection and GDPR.

Healthcare records are incredibly personal to each and every one of us. Many people will suffer and even die because the right information isn't available at the right time.

If this is the impact, our right to free and unrestricted access to our healthcare record shouldn't just be a matter of data protection, but a basic human right.

So please, ask your GP, hospitals and healthcare professionals for full record access, you might just save yourself and the NHS.

Useful links and references