There is much talk about how AI will radically transform healthcare, using big data – our data – to find new cures and insights.
But for all the excitement comes critical issues surrounding data use and ownership. What is the right regulatory balance that maximizes positive patient outcomes? How can we as patients understand our rights and what happens to our data in this brave new world? Transparency will be a central factor in this debate. We need to know how our data is being used to be able to make informed decisions about that use.
AI is the rare case where I think we need to be proactive in regulation instead of reactive, Elon Musk recently cautioned at the US National Governors Association annual meeting.
Data is the key for AI to reach its full potential in healthcare. However, data sharing is extremely backward in today’s healthcare world due to a combination of strict regulation and outdated technology. For example, it is illegal for doctors, nurses and other healthcare providers to simply text or email patient information. Today, much of our healthcare data sits on private servers inside hospitals and doctors’ offices. Accessing the data is still a big problem, let alone analyzing it. That is changing as the healthcare industry adopts cloud technology and new tools to improve how we treat and share data.
So the more complicated side of this transformation is what happens when data scientists start to view this treasure trove of data. Where do we as patients fit in? Isn’t it our data? Do we have a say in what happens to it? If others profit financially from discoveries, do we get a share?
The book, The Immortal Life of Henrietta Lacks, offers up a cautionary tale. Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells—taken without her knowledge in 1951—became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family today can’t afford health insurance.
As our digital data enters the scientific stream of discovery, are we all becoming Henrietta Lacks?
In the 1950s, scientists were seeking specific cells that enabled them to conduct experiments. Now, every bit of data is valuable and the more of it, the more valuable it becomes. What might have seemed normal at first glance, suddenly gives insights when compared with billions of other data points in a way only a computer running a complex hypothesis can see.
The search engine and social media giants of our time have already made us the product. We are happy to get “free” access and connectivity in exchange for our personal data for these systems to sell to advertisers and others.
The impact of healthcare data will be different, but no less revolutionary. Federal privacy rules, known as HIPAA, protect patient data from disclosure and inappropriate use. In general, you legally own your own health data. Yet, there is an exception for research with anonymized data. That means hospitals and others can use your data as long as they don’t identify you in doing it.
Will hospitals or data storage companies end up owning this valuable data? Since our information is the key asset for research, should it be public property? Should we make it easier for researchers to acquire data, so cures can be developed more rapidly?
Whatever the answer, transparency is key in this debate. We are still in the exploratory stages, but we must be proactive, both at the regulatory level and as patients. Healthcare providers, especially those involved in research and clinical trial work, must ensure a balance between their patient bill-of-rights and progress towards medical advancements that have the potential to improve the quality of life for millions. To do this, they will need to deliver a very consumer-friendly experience to their patients, along with complete transparency of all patient data management. This is where newer technology built for the internet and today’s mobile-first, ease-of-use standards can have the most impact. CDs and faxes that have reigned supreme across all facets of healthcare should be relegated to the stone-age they represent.
The long-standing dilemma of the good of the one (or the privacy of the one), versus the needs of the many is not new, but AI brings it to the fore with stark clarity. There is no doubt we are on the path toward a whole new realm of medical ethics and the call to action is on us, the human product, to hold our healthcare institutions to the high level of transparency this brave new world demands.