The Data Divide: Why Patients Embrace ChatGPT While Withholding Health Data from Companies
For years, healthTech companies tried to convince patients, physicians, and hospitals to share their medical data—with little success. Then ChatGPT happened!
Hey, I’m Zina Sarif, founder and CEO at Yendou, welcome to a subscriber-only edition of my weekly newsletter. Each week, I chat with executives from BigPharma and CROs, as well as founders of BioTech and ClinTech companies and their shareholders, to discuss the game of clinical trials, the rising costs of drug developmennt, the urge to speed, and how to navigate operational inefficiencies on the road to commercialization.
Here, I share with you some nuggets from the room.
We never cared about sharing our health data. What bothered us were the companies who craved it.
For years, Big Tech, pharma giants, and healthcare providers have tried to convince patients, physicians, and hospitals to share their valuable medical data—with little success. Yet today, we see physicians and patients happily uploading electronic health records (eHR) to ChatGPT.
And everyone is left wondering, "Why ChatGPT and not me?"
The answer? Because ChatGPT deserves it.
In September 2022, I attended a meeting with the heads of Pharma/life sciences accounts at a well-known Tech company (you know the one). We discussed the use of users' mobile data to optimize cancer patients' therapeutic decisions and personalize clinical trial recommendations. Unfortunately, the company - with access to a wealth of user data - couldn't proceed because users simply wouldn't consent.
Patients! The conclusion? There is nothing we can do! Really?
My words back then hold true today— I assert that we, the People, care little about data privacy if a product meets our desires (even if it includes anxiety, hate speech, and depression). Just look at how eagerly we collaborate with Meta, Twitter, Amazon, and all those delivery apps.
Every second, billions of users generously share their data with the big four, all for the sake of convenience.
The snag with health data is that health companies over the years wanted a lot of it without offering much in return.
I must confess, I too am guilty of this. I've had numerous meetings with oncologists, explaining our need for regular ctDNA samples from their patients battling metastatic cancer. Meanwhile, I shamelessly declined any notion of sharing the results with them (not that I had a say in the matter).
We demanded more and more consent from patients, but for what? They asked the same question and rebelled against checking the box of our terms and conditions.
But then there's the exception: 23andMe. A captivating case study showcasing how a hip company succeeded where most healthcare dinosaurs failed—convincing the world to hand over their genetic makeup to a commercial entity. How?!
Anne Wojcicki, the mastermind behind 23andMe, shared her wisdom with the world in a fascinating interview with Red Hoffmann, the founder of LinkedIn. It's a great lecture on how to motivate people at scale to share their health data with you (Podcast: Masters of Scale; episode 43).
Oh! OpenAI didn't even bother asking users for their health data. Yet here we are, feeding it millions of data bites every day.
Why do those Silicon Valley Tech Bros keep snatching victory from the jaws of defeat? The truth is, they blessed us with Google and Facebook as educational tools. They showed us very early that accessing users' data is a cakewalk. You just need an unhealthy obsession with delivering mind-blowing value. Something so extraordinary that data privacy becomes trivial.
We gave them our data, but we refused to #LookUp, steal, and incorporate. We decided that the rules of Tech don't apply to the realm of Healthcare.
The saga of Web 2.0 has repeatedly shown us that data is the tax we pay for indulging in hip products. Build something people want, and their data will be yours.
To users, data privacy is never sacrificed—it's an exchange currency. We, the users, patients or not, have grown accustomed to the gentleman's agreement. Way back in 2008, we grasped the truth that internet usage is a transaction. With cool companies granting us access to the world, we give them access to ourselves.
Healthcare companies struggle to comprehend the economics of personal data transactions. They yearn for patients' health data for a promise called "research purposes" or “bringing the science forward”. But that’s not what people want.
The invention of stringent data privacy regulations achieved only one thing: It increased the value of data in the market, raised users' awareness about the value of their data capital, diminishing their willingness to cooperate and share what rightfully belongs to them with institutions that are unwilling to reciprocate.
ChatGPT, like Google, Twitter, LinkedIn, Amazon, Uber, and others, was willing to give first—building products people want.
They earned access to our data.
So what can you as a HealthTech, BioTech, Pharma or hospital do to access and centralize access to data?
The answer is:
What do patients want?…
They want empathy:
Ok, let’s admit it! It’s easy to be more empathical than an overworked healthcare provider.
They want certainty:
and AI might be wrong 12% of times but we humans are no better. Human misdiagnosis range between 2.2% (myocardial infarction) to 62.1% (spinal abscess) [Newmann-Tocker et al., May 2020].
And maybe cure?
Okay, I don't think ChatGPT will provide a cure. However, for companies providing a cure, you should definitely consider Digital Therapeutics (DTx) using conversational assistance as a companion to the therapeutic treatments patients purchase at the pharmacy.
I have always wondered why pharmaceutical companies would not add a QR code to the packaging of their drugs to enable patients to log into a safe virtual space and connect with other patients using the same therapy.
The other answer is:
What do doctors want?..
the last time, they were asked it was in 2012 and the results were published in supportive care in Cancer at Springer. (My Background in cancer research made me go to Oncology again…)
But this is a late-stage development newsletter, and the question is: What do investigators want?
We talked to investigators active in interventional women's cancer studies, and here are the top 5 priorities:
Well-designed studies from a scientific perspective.
Promises to generate a very high impact scientific finding.
Well-designed from a patient point of view.
Maximizes the likelihood that my site will enroll patients.
Tests the most novel therapy.
Now, how can we design the clinical protocol in a way that offers investigators a great appetite for electronic health record (eHR) sharing, patient recommendations, and a higher rate of additional electronic case report form (eCRF) consents?
It seems to me that what principal investigators (PIs) want is "a great investigational product," and focusing on delivering great medicine might be the fastest way to reciprocity.
But what we also need is a great messenger. As long as late drug development is not perceived as sales, most companies are selling their clinical pipeline to sites undervalue.
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Have you enjoyed the first issue, let me know!
Is there a subject, you would like me to discuss, write me at zina@yendou.io