Dear NHS - do your data job
A week in hospital confirms what many likely know but choose to ignore.
I’m still in the hospital but way, way better than a week ago. I’ve had plenty of time to reflect on the experience. This story is about data, its use or lack of use as I’ve experienced it and what I think could be done as baby steps. I know there will be plenty of ‘ah but…’ That’s OK - I’ve had that most of my life. I have the added benefit of total ignorance on this subject other than today’s experience which I can cross reference to my 50 year life in private industry.
Last November, I wrote about the curiously unjoined up state of the UK’s NHS. Today, after a week as an in-patient with a modestly complex condition, I see the problem more clearly. Let’s start.
I’ve asked this question of NHS practitioners before - it goes like this: “Why can’t you just share my health data with whoever needs it in the NHS?”
The answer is complicated but if I’ve read it correctly, the peer through answer is: “Because we’re not sure who will read it in a manner that maintains confidentiality.”
On its face that seems reasonable but is in fact bizarre. The medical profession is awash with data from a bazillion sources both public and private. It’s how medical science progresses FFS.
BUT, there is a fear among health professionals that given the chance, the private sector will hijack personal data for profit. There’s a surprise given that the former Labour UK government handed over the keys to the NHS coffers in what were called public/private partnerships designed, again on their face, to improve the lot of the then - as now - struggling NHS. This is what was said about PPP in 2013:
More than 20 years since the UK launched its first private finance initiative (PFI), the benefits of healthy citizens to a nation’s economy and growth are even clearer. Many countries are experiencing a rising demand for healthcare services, whilst continuing to have constraints on public resources available to fund such developments.
PPPs offer innovative and entrepreneurial approaches to providing the services and facilities demanded of 21st century healthcare. The emphasis is on generating quality service outputs rather than treating building infrastructure as an end in itself. Also, the creation of strong partnerships is moving service delivery away from a project-by-project approach to one that includes strategic and policy developments for long-term results.
It’s not going well. By 2017, the PPP system was a shambles. In 2022, media was enthusiastically reporting great success with the public/private partnership, especially as it related to provisioning for the COVID-19 pandemic. I guess that’s before we saw the detail and extent of grubby fast tracked contracts that enriched Tory party mates at our fucking expense and which to date have still not been investigated.
Curiously, The Independent, in its defense of PPP says that:
Indeed, ever since the NHS was established in 1948, independent providers have played a key role in the delivery of universal NHS healthcare, with the Nuffield Trust estimating that around 22 per cent of the English health spending currently goes to organisations that are not NHS trusts or other statutory bodies. This includes almost all of general practice, community pharmacy, as well as a large number of voluntary, social enterprise and other independent providers delivering care to NHS patients free at the point of use.
Yes, but people still died on their thousands. Today, the NHS is in turmoil as its staff under various fractured union arrangements fight to get a pay rise that helps get them back to where they were years ago. But that’s only part of the issue and in any event, you have to wonder why, if the pay story was so central, then why hasn’t it blown up well before now. There’s a subtle but relatively simple answer. The pandemic changed everything except one important metric.
The available pool of surgical and medical staff is relatively fixed. It is limited by the number trained and available that have not left the NHS or been replaced by those brought in from overseas (mostly) or via private banks of staff. The same banks are staffed by ex-NHS workers who get paid more for doing the same job or, more likely, can better choose how much work they want to do. If you’re expected to routinely spend 10,12 or 14 hours on the job as a trainee or junior doctor for years on end, wouldn’t you be keen to get out from under that drudge as fast as possible? Where’s effective HR when you need it? Absent it seems.
This week I’ve dealt with at least 20 different NHS professionals and that includes the grunts who come sweep my floor, bring food and clean out the commode I have to use. Not one of them moans about pay. They are most concerned about conditions. Those same conditions that drive staff towards the private sector in hopes of fulfilling a vocation most of them clearly love but which crushes them by staying in a fucked up NHS.
The answer, as always, is privatize. The long run theory states that government is too short term in its thinking and ministers haven’t much of a clue what they’re doing anyway. (Note: on a recent podcast, former Justice Minister Rory Stuart confirmed exactly that assessment.) If that’s the case then what are the civil servants who are meant to be running policy doing? Under our current government? I imagine most of them are hiding from the bully boy (and girl) assholes that seem to dominate the major policy departments, including the NHS.
None of this makes sense unless you subscribe to the view that the private sector really can provide better health outcomes than the public sector. We only have to look over the Atlantic to the USA to see how well that is working for the vast majority of American citizens. From the highlights:
Health care spending, both per person and as a share of GDP, continues to be far higher in the United States than in other high-income countries. Yet the U.S. is the only country that doesn’t have universal health coverage.
The U.S. has the lowest life expectancy at birth, the highest death rates for avoidable or treatable conditions, the highest maternal and infant mortality, and among the highest suicide rates.
The U.S. has the highest rate of people with multiple chronic conditions and an obesity rate nearly twice the OECD average.
Americans see physicians less often than people in most other countries and have among the lowest rate of practicing physicians and hospital beds per 1,000 population.
Screening rates for breast and colorectal cancer and vaccination for flu in the U.S. are among the highest, but COVID-19 vaccination trails many nations.
How does this triangulate back to my data issue. Here goes:
When I was picked up by ambulance, the senior paramedic asked permission to access my NHS record. Let me think about that for approximately 2.1 nanoseconds as I’m yelling in agony. So now she has access and can cross reference that to what she’s been told. She immediately picked up that I’d missed telling her about a 2017 COPD diagnosis. That in turn has a primary impact on the care type I needed at the time.
After hours of triage and negotiating a bed, I was admitted to a high intensity care ward. Regular readers will already know my hard luck story from that time. What is less clear are the number of times I’ve had to repeat that same story to clinicians, pain consultants, chest and stomach consultants, senior ward nurses and so on. And yes, some of the faces have changed, even if the badges stayed the same. Why? Because a certain King was crowned this weekend, a special public holiday was in progress and that meant the already stretched staff had to be rejigged. But what about my fucking data? If a paramedic can get it then why not the medical teams?
There is no clear answer. Nobody really knows. It’s not something they think about. If anything, it gets worse. My blood pressure and SATS are regularly monitored as they need to be balanced out before I can go home. The last thing they want is a repeat customer. The results are available on a paper print out attached to the machine in my room, but they have to be checked and entered onto a remote station. Sometimes the nursing staff do this automatically, at other times, they write stuff down on scraps of paper and then transcribe. Think about the potential for error - right there.
I brought this up with one of my daughters who works in healthcare. I said:
It’s glaringly obvious to me that one of the biggest barriers to efficient outcomes (aka unlocking genuine value and real money) is a crap communications strategy and/or policy that’s endemic across the NHS.
She wholeheartedly agrees but feels powerless to do anything about it. The nursing staff I spoke with who are prepared to put their heads marginally above the bureaucratic parapet to talk with me also agree. They don’t understand why things are so difficult but like so many others regardless of industry or profession, have workarounds. In many ways I see myself as a participant in an NHS that echoes the kind of ‘can’t change, won’t change’ I’ve seen so many times in private industry. Don’t get me wrong, some parts of the ‘don’t change’ are invaluable to quality care but there’s a good chunk that could be usefully sloughed off.
In private industry, large firms were sold on promise of the sunny upland hills of a joined up ERP system, originally promulgated around 1989 but which got into full swing in the 1990s. Today, and despite the Frankensoft monster of tech splatter, many firms believe they cannot possibly live without their beloved, over bloated, dysfunctional but heh mission critical ERP of yore. The same broad mindset seems to imbue the NHS albeit at a much deeper level.
I think that NHS mindset can be fixed because the nature of NHS care really is life or death. I am firmly of the belief that despite the byzantine state of the NHS, with its spaghetti soup of departments, projects, management structures and g-d knows what else, that a few, relatively simple and inexpensive pilots could readily demonstrate how professional lives and those of the patients they care for can be immeasurably improved, with savings that release resources back to the service. Who wouldn’t want to vote for that?
In the end, it’s about the fucking data. If a paramedic can use it to improve my outcome in the back of an emergency ambulance, why can’t all other related professionals have that same story to hand, adding to it as more data in the shape of my diagnosis and treatment comes through. Use that data and put aside the political bollox that masks the true nature of the relationships between private and public sector.
Government? Your job is to put guardrails around this and employ consultants who know WTAF they’re doing, Don’t draw from the Big 4 Fuckwits, but from dedicated practitioners who want to make a difference. Find those who think different. They are there if you look hard enough. I’ve met a few this week.
Forget the McKinseys, BGC s and other cerebral big brains who want to sell more consulting. If you cast around you’ll quickly pick up the vibe I’m talking about. Run a simple repeatable experiment designed to capture and enhance data through a patient’s treatment journey. Pick a few common issues and see where the threads go. In the 21st century, when we’re awash with data, there is no excuse. Let me leave you with a back of fag packet calculation covering the waste I experienced.
In the last week, I spoke with at least eight different practitioners who interact with my medical record, often recounting the story. I know that as symptoms unfold, treatments need to be skewed to the new data, but this is a layer cake, not a sponge sandwich. I also realize that each specialist brings their own history and experience to the table. That again enhances the flavor of the cake. I also know that the data will feed out to my discharge and the bag of goodies with which I’ll be sent home, along with case notes out to my GP and longer term treatment. That’s all to the good.
If you conservatively but fully cost an hour’s NHS labour hour, (and I have no idea how accurate that number is, I’m thinking aloud here) I’d be surprised if it comes much short of £800/hour. I reckon it took a good 12-15 mins to explain each time, so let’s say that’s a couple of hours. Let’s also assume that each professional diligently updates my record. They’ve got to be sure they don’t duplicate what’s already been done, although I sometimes doubt that’s the case, or that they’ve looked at the notes, especially if they’re a bank clinician covering for a regular staffer. Be that as it may. I’ll be generous and assume that adds no more than 30 mins to the total. Now we’re at about 2 1/2 hours or £2,000 in my book. That’s an awful lot of cheap paracetamol or a at least a bit of a more expensive drug. Multiply that as many times as you like and you can quickly see where money literally flows through people’s fingers with barely a second thought.
Now think what that money could do. Pay better? Pay additional staff? Improve scientific research? Improve diagnostics? Manage spend better? Gain supply chain insights currently hidden? Expose more waste? Who knows?
All I know is that despite the great care I’ve received and for which I am more grateful than anyone can imagine having experienced the pain of nearly drowning in my own infection, I will be leaving this hospital with a profound sense of sadness. My life will go on and I’ll continue to get good care as far as the NHS is able. The same cannot be said for the people who have to work in that system.
There is a final irony. During the pandemic, we stood on our doorsteps enthusiastically banging pots and pans in celebration of our NHS. Yet even now, our corrupt government refuses to pay them. It’s likely but uncertain this government will be booted from power in the next 18 months or so. Is there any political will anywhere to take just a wee look at the problem I’ve identified and do something? Anything? Are there any politicos out there up for being a hero?
Den, I was sorry to hear in your last missive you were hospitalised. I know you’re getting better though just by reading this!!!!
As usual, you hit the nail on the head. When Dad was in the BRI I was apoplectic with rage about the same. Bits of paper with hastily scribbled on notes, staff stood for hours at terminals on portable trolleys inputting vast amounts of data. Yet no one appeared to be able to tell me anything about Dad’s treatment or condition (Dad had a total laryngectomy in 2009 so we had to be his voice in there). Suffice to say, and sadly, I can’t concur on your view of the level of care in my Dad’s case for so many reasons - in my view, ineptitude, non-communication, lack of consistent process and yes - good data. All underpinned by a significant and regular lack of required staff for each ward/shift.
Get home soon Den and don’t stop poking the bear!!!
Glad you are improving. i think the central issue is that when the NHS was founded in 148 the UK population was 50,033,200, there was little immigration and people lived very basic lifestyles:
http://www.primaryhomeworkhelp.co.uk/war/changessince.htm#1948.
Today the population is 68,898,267 (plus we have to assume a large number of illegal immigrants/slaves) and the medical world is unbelievably sophisticated. The old adage that in the late 40's the NHS only had one iron lung and somebody is already in it still applies to a degree today albeit on a much larger scale.
The hippocratic oath and HIPAA compliance means everyone has to be treated in the USA regardless of ability to pay, which plays havoc with commercial medical businesses and basically means what's left of the middle class gets hammered with medical bills.
It's an extremely tricky conundrum, especially with big pharma looking to get everyone and their brother on lucrative 'for the rest of your life' meds and a lamentable shortage of holistic care.
The NHS is clearly at breaking point (someone in my family just became a GP and earns less than someone at burger king). It will take enormous political will and skill to sort out and sadly I see zero politicians capable of doing anything but their masters bidding...