The digitalising of patient records — why patients MUST be involved

Summary

In this blog, Tina* discusses the patient safety issues that can occur with electronic patient records, highlighting how easily errors can occur in a patient's record but how difficult they are to fix, and why patients must be involved in the digitalising of their own records. Tina gives her perspective as a clinician but also her personal perspective as a patient who has had stigmatising material propagated throughout the system while important clinical information was excluded from her record. 

Content

Errors and irrelevant information on my record

A couple of years ago, when I first had access to the NHS app, I noted that on the allergy section of my record it said I was allergic to aspirin. I am not. It also had my weight down as over 120 kg when I weigh half that. I contacted my GP at that time and those errors were corrected. 

Imagine my surprise when I am at an appointment with a consultant gynaecologist to see on the computer screen that my medical history contains nothing relevant to the consultation. Instead, there are 15 lines of incidents relating to a long period of depression almost two decades ago. These include ‘suicidal ideation’, ‘deliberate-self harm’, ‘overdose’, ‘chronic depression’, ‘wound’, ‘admission to psychiatric unit’, ‘under section’, ‘depression’, ‘self-harm’, ‘admission to psychiatric unit’, ‘first ECT’, ‘ECT’, ‘self-inflicted injury’, ‘recurrent depression’, ‘ ‘suicide attempt’… the date order is wrong, several lines are repeated.

There are also a few entries that are irrelevant, like ‘fracture left radius’ that happened when I was 12, and ‘arthritis knee-left’—I struggle to think when I've ever had arthritis of my knee.

I am a doctor and work at this hospital and though I am seeking my own medical care, this consultant is also my colleague.

Do I want her to know about this time in my life?

Is this relevant to my medical condition now, 20 years later?

I am potentially facing abdominal surgery and relevant information has been excluded from the list:

1. A serious anaesthetic problem.
2. Bilateral anterior cingulotomy (a brain surgery).
3. Appendicectomy.
4. Cholecystectomy.

There is also no mention of the multiple operations on my feet, but that’s fine… at the moment feet aren’t the problem.

However, I am alarmed and I feel as though my privacy has been violated.

Impossible to fix

What now?

I don't know what to do and I ask one of my work colleagues who knows more than I do about data entry. Through a series of emails, I am advised that because the referral originated from my GP surgery, any corrections have to come from there.

I also discover that to get the information changed, the GP needs to send an official letter of ‘redaction’ to the Trust.

I contact the GP practice and write a letter. It takes another three calls to finally speak to the practice manager and explain the situation. She agrees this is less than satisfactory and says she will speak to the GP. I receive a phone call from the GP who is profusely apologetic and explains that the referral is a template which is pre-populated from the digital record.

The GP agrees that irrelevant information has been sent with the referral and relevant clinical history has been excluded. I tell the GP that I have no problem with a reference to the severe and prolonged seven-year episode of treatment resistant depression or that I had ECT and was hospitalised when suicidal. But the GP thinks that this level of detail is inappropriate for a gynaecological referral since I have no mental health problems at the present time. Through an exchange of correspondence, we come to a joint decision about what is and isn’t relevant in my medical history.

The practice assures me that a letter of redaction has been sent to my hospital and the new referral with the agreed clear, relevant past medical history will replace what was originally sent.

At the next appointment, nothing has changed. I call the GP and they confirm that the letter of redaction has been sent. I contact the clinical data manager and they tell me that it will be acted on ‘soon’. Since I was also referred to a tertiary provider elsewhere, a letter of redaction has also been sent to that hospital.

I am concerned because I have been scheduled for surgery and the fact that the crucial information about a rare genetic enzyme deficiency that affects an anaesthetic drug is missing from my digital record.

Thankfully it is put right in time.

But it is not over yet. I have a referral to the physio department; this time the foot surgeries are relevant as I also have a peripheral neuropathy.

To my dismay, on record is the same medical history that was displayed that first time I had to get this sorted out.

I meet with my GP and the practice manager together. The GP has now gone through every letter in the old ‘Lloyd George folders’ and the information has been coded onto the digital record. The GP explains that some of this information has to be put on the record because it ‘has happened’ and it cannot be removed. But there is an ‘active problem’ list and an ‘inactive problem’ list.

The practice has been in touch with the software supplier because they cannot understand why in this instance it is pulling irrelevant information, not even in date order, from my ‘inactive problem’ list to populate the ‘past medical history’ and failing to pull out what is relevant.

This remains unsolved and obviously they are concerned that this may also be going unnoticed for other patients.

The only way round this for me is that the practice has decided to put a warning pop-up box on the system that any referrals sent out on my behalf should be thoroughly checked first.

But, unfortunately, they realise that the referral to the physio came from a different part of the system and therefore they cannot control it and they cannot put it right either.

A patient safety issue

I work in the Emergency Department. I am dependent on a patient’s digital record. When I ask questions about medication for instance, they often say to me — “I don’t know, can’t you see my records?”

My patient notes are made on a clinical record template on our hospital system. When I access primary care records (EMIS for one county, but another system for the other county), I copy the past medical history (active problem list) and the list of current and repeat medication and allergies. I paste the results onto the relevant parts of my personal digitalised notes. BUT I also talk to my patients and have discovered an alarming number of errors.

I cannot be sure that patient safety is maintained if I were to incorrectly enter an allergy on Trakcare because, at my place of work, the ‘safety feature’ does not allow it to be deleted.

So when I say to my patient, “I see from your GP record that you have a penicillin allergy” and they answer, “no, that’s always been wrong. My brother is the one with the penicillin allergy.” I worry.

It is not uncommon to discover erroneous information contained on the digitalised record and what do I do?

I suggest that the patient let his GP know, he says he already has, many times, and nothing has changed. I think of my own experience and I sympathise.

But uncorrected, my patient may be deprived of treatment with a useful antibiotic if he should need it, and possibly his brother may be given a drug he is allergic to.

One data entry error is replicated throughout the entire system.

In my own case, there have been multiple errors: irrelevant, stigmatising and highly confidential data went to those who do not need to know, while relevant clinical information was excluded.

How does that make me feel? Stigma is not dead and I want to be able to be confident in seeking medical care when I need it.

There was also a more obvious patient safety element: my allergies were incorrect — I am not allergic to aspirin and the anaesthetic drug, suxamethonium, which I cannot metabolise properly, was not included on the list.

Patients MUST be involved in the digitalising of their records. I see writing in the medical press where doctors are not in favour of their patients viewing their records. I believe that is not just paternalistic but also a dangerous anachronism. These are our records, and we must make sure that information held about us is both correct and relevant.

Related reading on the hub:

• NHS England warns electronic patient record could pose ‘serious risks to patient safety’: what can we learn?

About the Author

*Tina is not the author's real name. The author wishes to remain anonymous for this blog; however, they are happy to be contacted if anyone has any questions. Please email info@pslhub.org in the first instance and we will pass your message on to the author.