Don’t let Big Data bully patients at your health conference
It’s nearly two years since I wrote this blogpost, after attending a huge healthcare conference in Barcelona. (remember those, pre-Covid?) Now these events are all online of course, and yet my biggest takeout from that echo-ey conference venue is still what I experience at digital versions in 2020/21.
Why is what I described then - the (unintended) marginalisation of patient voices - still happening?
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I was at a healthcare conference this week, one of the largest around.
The many platforms and stages were filled with established speakers from Pharma companies and noticeably this year more than ever, by technology providers, often heralding the potential of AI to revolutionise the sector.
There was a real sense in the audience (understandably made up of mostly health industry workers too) that Big Data was enfranchising so much patient data, into studies at a scale previously unimaginable. Millions, even billions of data sources were now being captured, processed and analysed for trends and patterns.
It struck me only afterwards, on the flight home, that this was perhaps an unintentionally utilitarian approach for healthcare advancement.
Big Data was surely the most philosophically ethical choice for research — it embraces the most amount of data from the greatest number who can offer it. Not only could these massive datasets find trends that were otherwise unseeable or invalid without sufficient data points, but in so doing, it could support decision-making to help an infinite array of patient populations (current or future).
In contrast, the conference offered hardly any airtime to smaller, ‘thicker’ data — drawn from those qualitative studies of patients, with sample sizes of perhaps fewer than twenty participants. Such small samples are commonplace and accepted in academic research as indicative and valuable in being able to focus the healthcare industry towards a patient centred perspective. Yet such data seemed missing — an uninvited guest, perhaps. Whose face didn’t fit the narrative.
“A few experiences and stories were indeed told on stage by patients, but much more widely available at informal coffee meetings and breaks. Their voices lacked the breakthrough quality of commanding graphs and triumphant clinical end-points.”
This struggle to embrace qualitative sample sizes has long been recognised, but typically as a methodological problem. However, my takeout from the conference was that it was as much an ethical issue too.
In an industry that pledges itself to being more patient-centric than ever before, there was but a handful of invited patients in the audience, including some invited as part of an organising committee for the event. A few of their experiences and stories were indeed told on stage, but much more widely available at informal coffee meetings and breaks. Their voices lacked the breakthrough quality of commanding graphs and triumphant clinical end-points. Their endurance, borne from many years of traversing the healthcare landscape, gave many clues towards what they found valuable, but such insight did not translate easily into numbers.
It was striking that the audience group that listened, shared and engaged most with this group of patient voices was….other patients. As delegates plotted their course between keynote speeches, workshops and catching up on missed emails, the narratives of patient stories that were rich with life experience but short on slides were rarely afforded a time slot.
As a researcher in healthcare, with more than a passing interest in AI and Big Data, I was no different from most of the audience in being wowed by the power and potential of what these algorithms were now capable of. But I valued my low-key salad lunch with patients just as much. Even if we did have to seek out a seminar room to eat it in, because no one in the lunch zone, not a single delegate, was prepared to offer a seat to anyone in our physically less-abled group.
I’m booked to attend another conference later this month, in a different industry sector. I’m fully expecting Big Data will be on the top table of speaker sessions. And why not — it’s an immensely valuable tech revolution that will change the way we work and live.
But I hope too, that the promotion of AI to the stage will not necessarily (and unintentionally) banish those personal, human experiences into the shadows, as the undercard to the main event.
So, Big Data — I’m a fan, too — but as the heavyweight in the room, it’s easy to throw your weight around.
Please tread carefully at conference, and don’t let that digital footprint accidentally step on too many human toes……