If you dug George Orwell’s 1984 or Animal Farm (or the Where the Wild Things Are movie) and are invested in the future of healthcare, this book’s for you. Grab this fiction book to take on the plane or kick back with during the holidays if you’re seriously interested in digital health and big data. Dave Eggers’ The Circle brings up a lot of difficult questions about trends in healthcare, particularly how digital health and big data will impact privacy. This dystopian novel’s set in the future–when a Google-Facebook lovechild has swept the world and sets its pace for spinning–and offers a glimpse into the future of big data in healthcare.
The guiding principle behind healthcare at The Circle? “To Heal We Must Know. To Know We Must Share.”
But how much do we deserve to know? How much should we be expected to share? And with whom?
Here are some of the big questions the book brought to mind as digital health and big data begin to pervade the healthcare system.
The 411, without (major) spoilers
Meg, our protagonist, is employed at The Circle. Her father has multiple sclerosis, and he and her mother spend most waking moments arguing with the insurance company to cover his treatment. But(!) at The Circle, Meg is able to put her parents on the super-deluxe free plan. Her parents no longer need to spend their lives hearing Cigna or Humana’s strange hold music, and they have access to some of the world’s best healthcare.
This comes as a godsend to Meg and her family. Cue ominous, suspenseful music: Dun, dun, dunnnn!
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
1. Transparency and privacy are opposites. So where should the line be drawn?
At first it all seems rosy: The Circle’s health insurance innovation has saved the day for Meg’s family.
But it’s not just a positive healthcare insurance innovation for the individual. Corporations insist the benefits are a two-way street. Soon, Meg is expected to attend support groups for children of parents with MS, she must get checked up every two weeks and finally, and most invasive, her parents are expected to share their whole private lives via webcams installed throughout their home.
The more that’s known about MS, the more that can be done to prevent or cure it. As the book says, “Sharing is Caring,” right?
“Transparency is sort of the other side of the coin from privacy,” Dan Housman, CTO of Recombinant by Deloitte, said in a Deloitte DBrief on big data healthcare analysis. Even excellent, necessary healthcare isn’t worth the cost of all privacy. Where is the line?
2. Sharing shouldn’t be required. What kind of participation should be expected from patient populations?
While corporate transparency is the real goal–large medical device companies sharing data with patients, providers translating that data and prices, payers explaining the reasoning behind premiums and pointing out loopholes, Eggers doesn’t seem to believe in it. If a giant corporation’s giving you something (data, including your parents on your health insurance like protagonist Meg, or any other perk), you can bet it ain’t free.
That’s the way of the world now, not just in a dystopia.
In The Circle, it seems that the important thing to keep is the ability to opt out. If you’re willing to forgo the benefits (preventative care, potential cures or improved treatment based on genomics or remote home health monitoring systems), you should be able to opt out of sharing data. But how can you, and what will withholding cost?
3. Preventative medicine is cheaper than playing catch-up. But when does tracking become invasive?
Part of The Circle‘s genius is picking up on Silicon Valley’s great loves and tech buzz phrases, but it also touches on what’s hot in healthcare. Preventative care and focus on wellness, anyone? Meg’s doctor points out that preventative care–digital health tracking through wearables and regular check-ups (think every two weeks)–for its young patient population (most people at the tech giant are under 30) saves so much money it makes these options possible. It’s true. The big data and digital health revolutions are doing some wonderful things (and will continue to in the coming years).
This tracking also allows the doctor to advise Meg to make tailored diet decisions based on her potential risk for certain diseases. The Circle’s employees, too, have a set number of steps they should take a day to maintain wellness. It all encourages workers to make their days harder to promote health.
Meg is offered the next gen of smartwatch to track all this data. But eventually, the trend toward miniaturization takes a strange (and terrifying) turn: microchips installed in children.
Your privacy may be the price of personalized care.
4. Data overload is part of the future’s dystopian dilemma. How much information is too much?
Anyone who’s spent a few intense hours on the Internet knows the debilitating crush of data overload. At The Circle, the employees get a high from checking their health scores, the number of zings they’ve received, the scores on their customer experience surveys and so on. But between all the automation (head nodding, typing, texting and giving vocal responses simultaneously) to feed the data beast, Meg seems to find equal parts stress in the numbers once they become overwhelming. How can she manage them all at once? How do they relate?
As NeuroMetrix CEO Shai Gozani said of device design, so too should healthcare be: the system should be “a facilitator of quality of life, not a determiner of how people live.”
Whatever the answer, prioritization of data will be key to enhancing, rather than overwhelming, healthcare.
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