Andrew Bailey, Co-Founder of DigitalHealth.London Accelerator company Convenet, shares his experience of being a patient, the interoperability challenges that faced him and the insight this has brought to his work in healthtech.
I began my clinical career on admissions units that were early Electronic Patient Record (EPR) and Electronic Prescribing and Medicines Administration (EPMA) adopters, and later ventured into healthtech to solve the inefficiencies in my own job. I have since co-founded two successful healthtech start-ups.
I’ve completed multiple NHS integrations over the years, mostly with Spine services and primary care providers, so I felt I had a solid grasp of how NHS data flowed through systems. But I had never been a patient during this time – that changed last month.
Let me be clear, I am an ardent supporter of healthcare free at the point of delivery: no one, anywhere, should ever be asked if they can afford their treatment. This is a luxury we have, one we choose to have every day with how we deploy our nation’s capital. But with 40% of day-to-day Treasury spending going to feeding the behemoth we have created, unless we take action, for how long can we guarantee its survival?
How my patient experience began
It’s a gorgeous Friday morning in May in Norfolk as I enjoy my hobby of blasting round British racetracks – I’ve always loved cars! I’ve just started my fifth lap of the morning, the little British-built car is feeling great and so am I. On the exit of turn one I collide with another vehicle at nearly 90mph. The rest of the day is a complete blank for me, but this is how I’m told it unfolded…
After regaining consciousness, I exit the car unaided into the track’s ambulance and I’m taken to hospital. I remember being on a spinal board and jabbed with needles but little else. I’m given a full head-to-pelvis CT scan, released from the spinal board and handed a copy of the Radiologist’s report with some handwritten notes on the back: call your GP on Monday to arrange a follow up x-ray to monitor a hydropneumothorax; and trigger the two-week-wait (2WW) haematology pathway as some unwanted lumps have been spotted. Thankfully, my partner had been informed by the racetrack and had managed to get from the hotel to the hospital. We extended our hotel stay for a few nights and drove home, three counties westward.
My patient experience continues nearer home
The Monday after the incident I contact my GP as instructed and I’m sent for bloods and an x-ray within 48 hours at my local district hospital. Immediately afterwards though I’m summoned to the surgery. An urgent outpatient referral is made and I’m instructed to attend A&E. I cross another county line to my nearest A&E, flash a referral letter my GP had emailed whilst en route and I’m whizzed straight in. I then sit on a trolley in a corridor, alone for nine hours without food, fluid or analgesia apparently awaiting a repeat CT. I’m visited by Nursing Auxiliaries undertaking regular observations and junior doctors taking my history repeatedly. I feel awful by the way; weak, hungry, thirsty and foggy with pain and I can’t walk very far as I get short of breath. But I’m independently mobile and just hoping my iPhone battery holds out. At near midnight I’m admitted, given a tuna sandwich and some pain relief. In the morning, the Pharmacy team say I’m being discharged on a cocktail of opiates. I tell them I have sufficient analgesia prescribed by my GP and they say they’ll get the doctor to amend the TTO (discharge prescription (To-Take-Out)). As I’m given my discharge letter, there’s a box of opiate-based tablets and liquid. The letter says my repeat chest x-ray was reviewed by the multi-disciplinary team (MDT) and I was discharged with no follow up. I did not have a repeat x-ray.
No-one, not my GP, nor the district hospital x-ray team, nor my local A&E had a copy of my CT scan from Norfolk or the Radiologist’s report. I emailed a copy to each team at each point of care when I arrived after showing my phone to seemingly half the country. On asking, I find that A&E have had to email a request across the county line to access my community x-ray too.
I feel worse upon discharge than I did on admission.
The testing continues
Later that day my GP advises that I attend my referral appointment on the Friday anyway, so I sleep the next 16 hours. On arrival at a major hospital in my own county, the consultant can see my community x-ray from 48 hours previously and again I share my Norfolk CT report: he refers me straight to Clinical Decisions Unit (CDU) for a repeat CT.
As an admissions clinician, I felt in familiar territory: I was straight in for bloods, my fifth and sixth needless Covid tests in as many days (lateral flow and PCR), ECG, cannula and observations. I was called to be seen by every grade of doctor having gone right back to the beginning of the clinical journey despite having arrived on direction from a consultant’s review. I was told that my D-Dimer test (a blood clotting test) had to be requested so I was to await a CTPA (CT pulmonary angiogram).
I’m then called forward for a prophylactic LMWH (low-molecular-weight heparin) injection so I politely query as to whether my D-dimer is back and raised, as I may need a therapeutic dose. The nurse happily investigates my challenge. My D-dimer is not yet back and I see her pause the prescription; 90 seconds later a second nurse approaches with a familiar syringe. I can see on her tablet that my dose is not highlighted as paused. This is not a nursing error at all, but a question as to technical design and implementation.
A nervous wait
13 hours after arrival my D-dimer comes back as raised and I’m told that a CTPA won’t be performed until tomorrow (Saturday), so I ask to go home. I accept a precautionary dose of LMWH and leave. Honestly, I’m rather scared at this point as a possible pulmonary embolism could put an end to some things I do and some things I want to do. But at least I’m home where there’s analgesia and a nice bed.
The following morning we’re back in the same place. The Charge nurse on reception is firing on all cylinders but I’m not on any of his lists. Nevertheless, within the hour I’m in and out of my CTPA and awaiting results. I’m pleased to say that the CTPA was negative for a pulmonary embolism (PE) but it did return a fractured sternum not visible on x-ray, which explained the pain. I’ll make a full and complete recovery and for that I am grateful to everyone involved in my journey. Also, the person with whom I collided will also make a complete recovery too, so this is by no means a sad tale: we’ve actually become good friends.
A new insight into interoperability
This whole experience provided me with a completely different perspective on interoperability. We experience interoperability in our everyday life, so why is it not so seamless in healthcare? If I triggered a bus-lane camera whilst driving in London, I’m sure the fine would successfully arrive at my Leicestershire address. So why can’t health data travel so seamlessly? At its core it is binary 1s & 0s, nothing more. I can turn my heating up and close my garage door whilst holidaying in Llandanwg within one app but…ok, you get my point.
The aftermath – the importance of patient access
As a patient who works in healthtech, I make a point of having access to everything about myself that I can: I am my own data guinea pig with Full Detailed Coded Access to my GP medical record.
As I type this blog, the post lady has arrived and I have a letter! I even have a referral to haematology too. However, there are some issues. My discharge letter says that my accident was four weeks ago – it was one week prior to admission – and that I complained of abdominal pain. I never once mentioned or indicated my abdomen: my chest hurt on inspiration. The system relies on GPs acting on the follow-up guidance they receive in these letters but there’s a problem when some details are incorrect. In my case the incorrect details are irrelevant to my follow-up, but others may not be so lucky.
My GP has six documents in their workflow as I write, awaiting acceptance into my record – they are PDFs with unstructured data. This is 2022, we should be able to send structured data into the record more easily. I can see my GP action the “2WW” haematology referral speedily; I can see my community x-ray report and I understand why I was advised A&E attendance. To me, the argument of patients having too much access leading to too many questions is misdirection. If they could see absolutely everything (where clinically appropriate) then maybe they’d ask fewer questions. I certainly did! I can even see that someone from haematology rang my GP to say that there was an error in processing the referral but they’ll sort me out anyhow: because I can see this I didn’t call my GP. All that said, I still can’t see anything about my hospital admissions from across the country!
I believe in the NHS but we must stop putting the sanctity of the brand above the value received by patients. Health data is sacrosanct, but if it’s kept in a sarcophagus, it is unusable and frankly, useless. We should allow for the efficient sharing of data: if EHRs want to keep the keys they should make it cost effective and technically easy to integrate, and not keep their cards so close to their chest.
What I’ve taken away from this experience
- NHS Digital’s Interface Mechanism 1 (IM1) programme supports and coordinates access to GP system proprietary APIs. It’s deeply flawed but exists, so we need something similar for hospital systems as there’s nothing right now.
- Even if technology is deployed it must be done right and it is not a miracle cure. Despite medicines reconciliation and a pharmacy-led drug history, I was dispensed medication I explicitly said I did not need.
- We need better task management systems in health: why did the nurse’s tablet not update to say my dose had already been paused by a colleague?
- We need to be able to write structured data back to the GP record more easily, not relying on GPs to read text-dense PDFs. The current mechanism that allows this is archaic. (Reach out if you want to know how it works.)
- Just give patients access to absolutely everything, everywhere (where clinically appropriate). We could go as far as to let the patient trigger a permission to access: the NHS App has cost a huge (I’m being polite) sum of money to date so we may as well use it to carry its own weight.
- If we can’t all talk to each other in a country as small as England, how do we hope to work with our friends in other Home Nations, let alone on the continent or beyond?
I attended four hospitals over six days: I was a cost burden on the taxpayer because of a hobby – I was having fun. But my cost to the system should have been far less because people should have been able to see the data they needed to do their job. I wanted all these people to see my data.
What’s our priority in healthtech? It’s simply helping people get better and feel better too, no-matter how long their journey is, in the most cost-effective manner.
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Convenet is part of the sixth cohort of the DigitalHealth.London Accelerator programme.
The DigitalHealth.London Accelerator is a collaborative programme funded by two of London’s Academic Health Science Networks – UCL Partners and the Health Innovation Network, MedCity, CW+ and receives match funding from the European Regional Development Fund.