• Pam Stoik

Top 5 Health Care Trends #4--Data, Data, Data!


Woman looking out with overlay of patient data
Patient data, how it's used and who owns it could all change in the future.

Who loves their #data more than anyone? #Healthcare professionals of course!!! They also love privacy at all costs which can create some challenges when trying to collect and use patient data. But if your eyes tend to glaze over when someone mentions The #blockchain or Non-Fungible-Tokens (#nftss) (mine used to) I’m here to tell you, snap out of it! I’ve already blogged my excitement over the opportunities NFTs present for people to take back control of their data and maybe even profit from it! There are definitely #environmentalissues and #greenhousegasemissions to work through here (apparently the blockchain leaves a massive #carbonfootprint), but I am banking on those issues being worked out sooner rather than later. I love this simple explanation from Dr. @WasimAwal and Dr. William Tsai who host the Curious Doc Youtube channel.


Data is, of course, also being used to “train” #AI which of course also can pose privacy challenges. But workarounds such as #federatedlearning help to address privacy issues while providing the volume of data necessary to produce meaningful results. Though I’m no techie, Accenture’s Built For Change podcast on how hospitals used federated learning to accurately predict which patients admitted with Covid-19 would need to go on oxygen within 24-48 hours is a straightforward, yet fascinating look of this hub and spoke AI model and digestible even if you’re not in #IT.


Of course there are SO MANY things to talk about with regards to data, but this is a blog, not a novel so I’ll end this section with just one more curious application: disease data #crowdsourcing. StuffThatWorks is doing just this with their attempt to fill a need for patients with one of thousands of #orphandiseases that have very little money invested in them and information available. The platform allows patients to share their own #treatment paths and #patientexperience with others, while also giving them the chance to search others’ journey.


The end goal is to collect a critical mass of information to provide meaningful #datapoints that may not exist elsewhere. It’s fascinating stuff that I’m intrigued by, especially as a member of the “orphan disease” community. When first diagnosed, a #Facebook group I joined provided me with so much information my doctors didn’t have time and, let’s face it, the personal experience to discuss with me. Every time I talked to my doctor about it I’d note, “there’s got to be a way to collect this information because it’s gold.”


Well, I think StuffThatWorks could offer just that. And it seems that I’m not the only one: in 2020 the company managed to raise a cool $9 million in seed funding.


urban skyline with illustrations showing data connections between people
Crowdsourcing could have a huge impact on orphan disease research

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