Is your desire for privacy actually hurting others?

It’s arguably harder than ever to keep information private in this modern age. Photos are taken digitally, shared, and then impossible to recover. Search history is gathered, triangulated, and then used by major businesses to predict and influence future behavior–often without any expressed consent.

Recently, Google’s Project Nightingale has come to the forefront of the conversation around healthcare data and privacy because one of the most powerful companies in the world has gained access to one of the largest known data sets of personal health information through a partnership with America’s second largest healthcare provider.

Google says its mission as a company is “to organize the world’s information”, and by gaining access to this health data they are going to be able to do a lot of good in the world. But many are very skeptical about. Shockingly, it was never communicated to the patients or their doctors that this data had been shared. But perhaps even more shocking is the fact that this data (on over 50 million Americans) is non-anonymized.

Google already knows quite a bit about the individuals that use their search engines and other tools. The risks of them having this much additional non-anonymized data seems extremely risky. What if they take this data and use it to discriminate against people for things like medical coverage or life insurance? What if an employer could pay Google a fee to see all of one’s health information as a way of augmenting a future employee’s standard background check? There are seemingly countless examples of why this work might be risky for individuals.

But, I also want to explore what the positive side of this work might be. Let’s walk through a typical person’s medical journey when they receive a diagnosis. Often, someone shows symptoms. They go to a doctor to explain these symptoms and if they are lucky that first doctor has an idea of what is going on and gives them a diagnosis.  The doctor may listen to the patient talk about their symptoms, take a look at a few things on their physical body, take the patient;s temperature, run a test or two and then give a diagnosis. Maybe this patient has the flu. That seems pretty straight forward.

But what about when it’s more complicated than that. What if this doctor considers all of the patients symptoms and test results and recommends that the patient go see a specialist.

Often, going to a specialist requires the patient to get a copy of their medical records from the current doctor (maybe from just this appointment but quite possibly from all historical appointments), which includes copies of test results that could digital or hard copy, copies of appointment summaries that could be digital or hard copy, and then bring those records to the new doctor often BEFORE the appointment so that the specialist has time to review those documents. These documents are often sent by snail mail, by fax, by email, by online portal, or sometime, and in my personal experience, have to be hand delivered from one doctors office to another because their digital systems don’t work, the fax machines aren’t working that day (do fax machines ever actually work?), and snail mail will be too slow.

Now think about that being further exacerbated by someone who receives a critical diagnosis. Maybe they have cancer, or a need for surgery. That’s often a team of doctors that need the patient’s medical history. Imagine deciding you want a second opinion. It can become completely overwhelming for even the most organized patient, and often information gets lost in all of these transactions. Tests are retaken over and over again, and the patterns that could have been noticed over time are not noticed because the files often end up as a stack of large papers.

To further illustrate how complicated this process can be, I sketched out a scenario that I personally experienced a few years ago-from initial doctor visit about symptoms to the eventual need  for surgery. There was an enormous amount of paper work that needed to be moved but also an unbelievable amount of time I had to spend just shuffling physical or digital papers from one place to another.

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For an individual that doesn’t have the capacity to go through all of this effort (many of these scenarios are kicked off due to an illness of some kind, after all), they are stuck not receiving the care they need, or receiving it on a MUCH slower timeline than they need it. What about people who work hourly jobs, and don’t have the luxury of taking a 2 hour lunch to run some of these documents from place to place?

When I think back to all of the time I spent shuffling information around and calling doctors and logging into new portals and then pause to consider that one day there might be an option for those doctors to simply log into a system that looks like a google search engine, type in my name, and then immediately have access to every test result or doctor visit I’ve ever had, I have to admit it reframes the obvious risks.

Beyond the risks of this data being used to exploit, I think it’s also important to ask the question – Is it unethical to NOT engage in large scale data collaborations like Project Nightingale if these project have the very real ability to significantly improve health and even save lives at an unprecedented scale and speed? I wonder how many people right now are sick and will continue to be only because all of their health history is scattered among multiple doctors and cities and systems. If that person could be cured by simply pulling all of that health history into the same place for one doctor (or machine) to process, then how do we weigh the risk?