Safety should trump privacy in next pandemic

Phone geo-tracking data could save thousands of lives

WHEN HISTORIANS of the future write their accounts of the pandemic of 2020-21, they will say we knew something this bad was coming, still got caught flat-footed, and hundreds of thousands of people likely died as a result.

They will not excuse the many ways we made the pandemic worse than it had to be; for example, how we failed to foresee the critical role that communications technology could have played in halting the spread of the coronavirus, and how we failed to establish beforehand the necessary legal and logistical structures to exploit that technology when it was needed most, in February-March 2020.

Those historians will ask why, when Americans first started falling ill with COVID, we were not able or even willing to use the geo-tracking data in those patients’ smart phones to trace everyone they may have been in contact with and to get those “contacts” quickly tested and isolated?

We know now, of course, what would have happened if the Trump administration or any governor had seriously proposed ordering wireless service providers to harvest that data for contact tracing by federal and state authorities.  They would have been denounced far and wide for this attack on our privacy rights. Multiple parties would have filed lawsuits against the plan.  By the time the matter was resolved, the opportunity to confine COVID through phone-data-based contact tracing would have been lost.

What a pity.

We need to acknowledge that, although we have been behaving throughout this crisis as if they were, privacy rights are not immutable.  Privacy rights can and should be adjusted — temporarily – in a true national health emergency.

Consider how we as families responded to the pandemic.  Our immediate and persistent priority was protecting the most vulnerable in our family group.  We sharply limited our exposure to the public-at-large – and only did so when carrying out essential tasks, with masks on.  Isolation in the home, deliveries of groceries and meals, socially distanced meetings with friends outdoors, closed parks and playgrounds: we eagerly embraced all these changes to ensure the safety and the future of our families.  Without complaint, we gave up many of our normal routines and pleasures because something greater was at stake.  Why should our willingness to sacrifice wither when our gaze shifts from our own families to friends, neighbors, business associates, and fellow travelers?

I believe that we need to be talking now about adopting new laws and policies that would allow government agencies, in an explicitly defined health emergency, to access personal information that has the potential, in the aggregate, to prevent deaths on a massive scale.

The laws and policies I’m talking about would need to have strong, built-in privacy protections concerning the collection, transmission, and analysis of digital data. These things would be difficult to write and enact.  But, with memories fresh in our minds of all the damage COVID has wrought, I believe we could get it done.

While at this task, I hope we would also prioritize the development of a unified, permanent digital medical record for every American, a record into which we ourselves could enter data.

We live in a mostly digital but highly fragmented world.  Physicians and health care systems mostly don’t talk with one another, and neither do the electronic records they all keep.

My experience with COVID testing and vaccines reminded me why we need to move in this direction.  I had one COVID test at CVS prior to a holiday gathering of my immediate family.  The test result was promptly posted to MyChart, the CVS health record; it is now the only item in that record.  The other vaccinations I’ve received at the same pharmacy – flu, pneumonia, TDAP – are nowhere to be found.  My other digital records (hospital, urologist, dermatologist, dentist, etc.) are somewhere else in cyberspace.  Stupidly, in my view, none of these records permit me to enter my own data.  As for the record of my COVID immunization, that exists only on the handwritten card given to me at the time I got my shots.

Perhaps it would be helpful to put the question of privacy rights – immutable or adjustable? – into the framework of an actual situation from the early days of the pandemic: the February 26-27, 2020, Biogen leadership meeting at a Boston hotel that became a super-spreader event.

There were about 175 company executives from around the country and the world who attended that meeting, during which 99 became infected with COVID through exposure to one and possibly two of their infected colleagues who had recently been overseas.  When the meeting ended, those 99 asymptomatic-but-contagious executives returned to their home states and home countries, where they unwittingly set off fast-spreading fires of infection in their localities.

According to Science, the journal of the American Association for the Advancement of Science, those 99 individuals were ultimately responsible for as many as 300,000 COVID cases in 29 states.

To those who believe in the immutability of privacy rights, I would pose this question: Knowing now how a new strain of the coronavirus can quickly turn 99 cases of the illness into 300,000, can you really say you’d stick to that position, no matter what, in another pandemic?

The pandemic of 2020-21 has shown that there are times when public health needs to take precedence over the right to operate a business, the right to free movement, and, yes, even the right to privacy.

Let’s take what we have learned the hard way over the past 15 months and develop the capabilities to deal with and overcome the next COVID.  These lessons, and our memories, are sure to blur with the passage of time; therefore, we must prepare as if the next pandemic is just over the horizon, as indeed it may be.  Never again should we be in the position where we are helpless to prevent thousands of deaths a day, widespread economic damage, and heretofore unimaginable disruptions in our daily lives.

Meet the Author

Thomas Kelly

Board member or advisor, Various health care related businesses
We saw that our research scientists and pharmaceutical companies were, thankfully, quite ready for the challenges of COVID.  Shouldn’t we expect the same kind of flexibility, innovation and skill from those who govern us?

Tom Kelly is a Massachusetts native with a long career in health care and related fields.  He has been a partner and national director of health care for KPMG, and the CEO of Mercy Health Plans (St. Louis, Mo), Schaller Anderson/Aetna Medicaid, and HealthSmart.