Whom should you tell if you have COVID-19?
By: Dimitris Vayenas
Tags: Covid 19, Data Science, Location Tracking, Facebook, Google

W ould you tell your friends and family of your situation and urge those you had recent contact with to test themselves, or would you keep quiet about it?

Right now, if you said you had COVID-19 what do you think the reaction would be? Would it be panic from those who know you? What about if you told them this news 6 months from now? Worse yet, what if we don’t find a vaccine for this as quickly as we hope? What if we are in the “worst case scenario” — that is if we will have to co-exist with COVID-19 right into 2021 which, by the way, is when a vaccine is more likely to appear. What if you had to reveal, after weeks of lock-down, that you were infected?

Dealing with the “stigma”

Past social experiments have proved that the vast majority will opt to disclose such information about conditions that do not carry an associated stigma. For example, an inhibitor to mitigating the impact of AIDS in the 80’s was the associated stigma of the particular illness. The attempt by public health officials to quarantine the gay community by closing gay bathhouses and discouraging unprotected gay sex in the early 1980s had violated two sets of social norms: the gay community’s reluctance to accept any negative information about their activities, and the general public’s reluctance to acknowledge gay sexuality at all.

Inhibitors to Transparency

The Covid-19 quarantine measures do not appear to violate such social norms. While everyone appears to agree that social-distancing is the responsible way to deal with the issue, it is safe to assume that most of us will be happy to disclose our situation should we fall ill to Covid-19. Disclosure of being a Covid-19 victim is not just a thing that public figures do for… publicity reasons, it just happens to be the responsible thing to do.

There are two important exceptions, however:

Some religious groups have continued to hold worship services, some of them quite large. Presumably their faith position is that prayer offers them Divine protection. They might, therefore, find it awkward to publicize if they all get sick. Similarly, a few countries have reported markedly lower infection rates than their neighbours, possibly because of strict social distancing policies implemented early. It is also possibly because they didn’t do much testing or did it with defective test kits. These countries, having boasted of the success of their containment policies, might wish to discourage reports of incidence.

In both of these conjectured situations, the effect we would expect is wider spread in the population groups involved. If the effect is sufficiently widespread and consequential, we might see governments and major religious movements destabilised by the ensuing reactions of the people affected.

Meanwhile, though, non-disclosure, for whatever reasons, is clearly likely to contribute to spread.

The role of modern Data Analytics

In the past few weeks, many of us involved with data analysis in the “social media era”, made our case about the goodness of recording and sharing personal data such as professional affiliation-status and mobility metrics in order to help our communities implement good social distancing policies and help save lives.

Sadly, this prospect is being confronted with skepticism by great thinkers like Yuval Harari (read his brilliant essay for the FT), as well as many privacy advocates.

How location data can help epidemiologists

As both Google (since March 2020) and Facebook (since May 2019) have started to disclose mobility data of their members in order to help institutions & governments around the globe assess the true impact of their epidemiological initiatives, let’s face the facts:

As noted in this great article, even back in the 19th century, location data were utilised by epidemiologists in order to fight cholera in London; they were used to great success by both Florence Nightingale and John Snow — the father of modern epidemiology.

Yet, many opt to not make a creative use of modern tools in order to protect our communities: Their approach is equivalent to possessing a tool (any tool) that can have much more precision and accuracy than our old tool, but being reluctant to use it due to fear of a future different from the known past/present! Even more striking is the fact that such arguments — against technical progress and for maintaining the “status quo” — are uttered by people who consider themselves “progressives”. Also, governments may opt to withhold data for fear of revealing vulnerability. The 1918 influenza is generally known as the “Spanish Flu” because Spain was the first country to report it. But it did not originate in Spain. The US, UK, France, Germany and Austria-Hungary elected not to disclose the illness among their troops lest they alert their enemies to reduced troop effectiveness. (John M. Barry, 2005, “The Great Influenza: The Story of the Deadliest Pandemic in History”)

Past century statistics are metrics of such things as victims by age & sex, or per country, county, or city. These are, by and large, the statistics that are reported nowadays in the daily briefings and the local press, but they have limited immediate and personalised relevance to us.

Making others safe by allowing the Covid-19 patients to mark themselves

Let’s imagine that Facebook would give us the option to mark ourselves Covid-19 positive (as they might give us the option to mark ourselves safe after a terrorist attack), and in return we would give it permission to share our anonymous (or eponymous, if we chose to) data about our location in the past couple of weeks.

Sharing such data would not mean that our friends and family (or employer, or partner that we may be cheating on and might feel embarrassed about sharing our true location all along) would have access to all our journeys for the past two weeks, but they would see only the data that are relevant to them. The friends with whom we never crossed paths in the past couple of weeks would see nothing; but all our connections (or members of the network) that crossed paths with would be instantly informed.

Educating our friends

It is surprising how many victims remain unaware of the symptoms of Covid-19, until it is too late. By having their friends posting their status (and symptoms) it is expected that we will practically help one another in order to act in a timely manner.

Helping our immediate communities

More important, our data would be able to be shared with institutions that we consider vital in these times of uncertainty (e.g., clinics and pharmacies, public transportation and supermarkets) in order to be able to test and protect their staff who might have come into contact with us, and who we may have unknowingly infected. Obviously, we would feel responsible for the harm we may have caused to them — unknowingly, given the long incubation period of the virus.

Assuming that many would be able to share such anonymous data, meta-analysis would be able to let us know information such as the “statistically safest” store in our area (e.g., the supermarket that was visited by fewer victims in the past two weeks.) Then the store would also be able to identify measures, tests, decontaminations that they could take to help our fellow human beings who work there to help us.

Mobility data can also provide further insights about the broader behaviour of communities in order to offer them further support in other domains such as financial support; The New York Times -by using location and mobility data- recently reported that social distancing is a luxury for many.

The benefits are endless.

Handling of the unintended consequences

Will there be unintended consequences? Of course there will be. But, provided that we are all acting responsibly at a time of war against the common enemy, these can be mitigated with relative ease.

An obvious such “unintended consequence” is the further strengthening of the social media conglomerates; competitors and privacy advocates appear to oppose this uptake of “power” by the social media platforms, even if this power can be a force of good to the community. Some may feel unease in sharing information with Corporations that may profit from such disclosures even as they understand the positive impact to their community, as they may fear that in the long run such disclosures may used against them by their Insurance Companies and other entities. If the situation was limited to a few thousands of incidents, State security services could have monitored the cases — as is the case in South Korea and Israel. But given the vast number of incidents, self-reporting to known platforms that we already trust with personal, if not intimate, details of our private lives ought to be utilised. Some Governments that consider the US as their adversary, may also feel threatened about the prospect of relying in US based social media platforms, even though they are currently unable not only to devise and implement such tools themselves but to even source respirators for their citizens; even masks and sanitisers for their doctors and nurses. Finally, the capabilities developed to address this epidemic could be used easily for more stigmatized conditions. We most likely do not want to create capabilities and legal precedents that could later be used to deny health insurance coverage, employment and other benefits to people with, say, STDs, drug abuse problems, or mental illness. Many people react reflexively against improved data collection and analysis because of these concerns. In the case of mental illness, in particular there is considerable room for disagreement about an individual’s diagnosis — or lack of one. Disclosure of all the available assessments, including those not clearly verified, could be extremely harmful, not only to the individual affected but to society as a whole. Among other harmful consequences, the resultant unwillingness to disclose relevant information would make it impossible to detect an epidemic of mental disorder caused by some biological or chemical agent. In fact, that impossibility is pretty much what we have now.

These inhibitors to such a Public-Private Partnerships will have to be addressed in a transparent manner, possibly in a global scale as this issue is a global concern. Sooner or later, countries will need to re-open their borders and may need to devise global protocols regarding the assessment of the travellers who are crossing their borders. Possibly the best health certification one could present would be the proof that he or she had suffered from Covid-19 months ago and thus is supposedly immune to the virus. This would not work, however, if it turns out that immunity from having had the disease is transient, or, worse yet, that the person can become infectious again without becoming reinfected.

Nowadays, the empowerment of the social media platforms is a popular topic in political debate. However, history demonstrates that democracies opt to even break down (or nationalise) private corporations when their power becomes a threat to the public. This tendency is unlikely to be any different now, should enough people decide that the circumstances demand.

Until then, we should ensure that there will be no associated stigma with the status disclosure and that the focus will be on how to make the most of the technology and data available in our disposal.

Instead of demanding less data\information, we ought to demand for deeper analysis of our data to be universally accessible, so that people around the world, who happen to live in countries that do not have the means or the willingness to develop such tools, can gain access

I for one, feel that Google should make available even more detailed and granular data, and\or provide protocols to anonymised data that interested parties can analyse, visualise and help make sense in an “Open Data” context. David Brin’s notion of “reciprocal transparency” is more relevant and valid than ever before.

I would like to thank:

Doug Samuelson for pointing my attention to his brilliant essays “Can Operations Research Help Stop The Invisible Plague?” c.2004 & “Can We Detect ‘The Coming Plague?’” c.2008 published at INFORMS OR-MS Today Journal and his permission to re-use some of his paradigms contained therein.

Jim Dewar, Warren Walker, Mike Rouse, Christos Diamantis & Pythagoras Petratos for their review and suggestions while editing the draft.