People = Numbers = People

Posted by: Alexandra Starks - Posted on:

Hi everyone,
This month I want to write to you about experiential learning. On the scheme, small groups of trainees get together about every four months or so to participate in what is known as experiential learning. If you’re anything like my cohort when we first started, you might be saying “What’s that???” Well, it’s hard to fully explain, but it’s usually some combination of theoretical learning and lectures, reflection, and extended role playing activities based on a specific theme.

The third and most recent experiential learning module that I attended was on the topic of human factors and ergonomics, and was my favourite thus far; it was also the one that hit me hardest, and its lessons have stayed with me on a deeper level than any of the others.

I have five chronic illnesses. The amount of time that I’ve spent in hospital as a patient is a big part of the reason why I’m so passionate about working for the NHS; I want to make it a better, more functional system for people like me. When I first started in informatics, I held a bit of a stereotype about analysts: that they only see people as numbers and pound signs. I thought that I could never be like that, because how could I ever separate my own experiences from those of the people whose data I was reviewing? But I was wrong. I’m very good at compartmentalising, and there has always been a very clear distinction between “Alex the hospital staffer” and “Alex the hospital patient,” even when those identities exist in the same building.

It isn’t that analysts and informaticians are trained to ignore patient stories, but it’s hard not to do it anyway. Wherever possible, the data in our warehouses is anonymised: names become numbers. And when all you see is numbers day in and day out, it’s easy, even for me with my nineteen years as a “medically complex” patient, to forget that every one of those numbers has a story, just like I do.

This first hit home about a month ago, when I was digging through one of our few de-anonymised tables for a project that I was working on, and came across my own hospital record. I was scrolling through, looking for something completely unrelated to me (or so I thought), when my name caught my eye. I glanced to the next field, and sure enough there was my birthdate. And my NHS number. I had to stop for a second and just stare at the dataset as the walls that carefully separated the patient from the staffer started to crumble. But, they came back up, and I went back to work, analysing my data as if it were any other.

A couple weeks later, at experiential learning, those walls took a more severe hit. One of our activities involved the case study of a patient who was taking two forms of chemotherapy: vincristine, and methotrexate. Shortly after a medical error in which the drugs were mixed up and injected in the wrong site, she died. Watching the video for the first time, my thoughts were mainly “I take methotrexate. I’ve been and continue to be a patient in wards that look just like this one. I’ve had these conversations with my nurses. I’ve had these conversations with my doctors.” I knew I was meant to be watching for the human factors that contributed to the error, but all of the sudden, in a work environment, I became 100% a patient.

For someone who is normally very rational and unemotional, I spent the next 48 hours feeling very emotional indeed. My story is really different from the one shown in the video, but in many ways, it felt so much the same. In the few weeks that have passed since, I have continued to feel quite emotional about the story at odd times. The first time it hit me was at home, when I was filling up a syringe with methotrexate to inject myself. That made sense. But it’s also stuck with me at work, as I write reports to show how many patients clinicians have seen in a given time frame, answer questions about how long our longest waiting patients have been on the list, or benchmark how well we’re doing against our treatment targets. Those walls that separated “Alex the hospital staffer” and “Alex the hospital patient” have started to come down, and I can no longer see the numbers as just numbers. In the span of a short video, the numbers became people again.

In some ways, I think that’s a good thing: it’s important to remember what we’re doing, and why we’re doing it. In other ways, it’s less good: getting caught up in emotions and people and stories doesn’t help the analysis, and even has the potential to harm it. Whether it’s a net positive or not remains to be seen, and I’m not sure that I’ll ever know that answer for certain. But despite not knowing, I’m grateful for the experience I had. As a patient, I want the person looking at my information to care about who I am, even if they’re just an analyst; as an analyst, I now know I’m doing that for other patients.     

I hope you’re all well, and that those of you in the 2018 cohort have excellent first weeks on the scheme, and as always, feel free to tweet me @alexandrastrks if you want to talk life on the GMTS!

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