Patient Cyber Narratives

Trust is never trust alone.

It is the absence of distrust, sufficiently absent to the point at which we can comfortably trust. Both of which – trust and distrust – are fundamentally perceptions, subjective and not always rational. We think we can trust someone because we think we should not distrust them.

It is just that simple.

But shifts in trust from one thing into another, or the varying trust we have in another person is quite complex, changing in ways we are not aware of nor recognize.

When cryptocurrency first came into public domain, it was largely relegated into the realm of internet conspiracy and mystique. And only those intimately familiar with the far reaches of the internet actually got involved in it.

But when the financial crisis hit just over a decade ago, the public lost trust in traditional financial institutions – though something else happened as well.

Not only did we lose trust, we shifted our trust away from traditional financial institutions and more into decentralized financial institutions. Cryptocurrency became more acceptable. In fact, certain cryptocurrencies became mainstream. We all know of, or at least have heard of, cryptocurrencies like Bitcoin or Ethereum. We may not have invested in them, but we are at least familiar with them.

Overtime, as we heard more and more about cryptocurrencies, we grew to accept them – and the more we heard, the more we learned. Now we have startups in healthcare promising to integrate the security of block chain technology (an aspect of cryptocurrencies) into medical record data exchanges. We have prominent entrepreneurs like Elon Musk investing heavily into cryptocurrencies.

The more we hear about something, the more we legitimize it. This is nothing new. It is the soul of propaganda, and the internet is rife with stories that went viral based upon nothing more than false rumors and speculation.

This is something the whole world experienced during the pandemic. Healthcare institutions lost credibility as they struggled to understand COVID-19 while disentangling healthcare policy from politics. Public trust soon shifted into an array of decentralized, online sources that at times correctly refuted false claims about the virus, and at times perpetuated a whole host of new conspiracy theories.

We know this story; we saw it unfolding in real time. But we have yet to understand the long-term implications of this trend. Healthcare will face enormous pressures from populist sentiment – and from previously discredited sources that have regained legitimacy as the public shifts its trust away from traditional institutions in healthcare.

In late 2020, Dr. Dhruv Khullar wrote in the Journal of American Medical Association (JAMA) about the decrease in trust in healthcare. He attributes the recent pandemic-driven decline in trust to a preexisting trend of decreasing trust in healthcare that has been ongoing for years.

He states the reasons are manifold and include numerous, mostly political and economic trends. Among which are – skepticism of authority and institutions; the spread of misinformation; fracturing of the modern media environment; and high levels of economic inequality and political polarization.

All of which seem plausible, and at a broad level are hard to disagree with. But he fails to identify any one particular cause contributing to this trend.

This is the true problem – the solution lies not in addressing the broad claims, but in addressing the granular process through which these broad claims form. The bits and pieces that come together to form the patient narratives that drive patient behavior – and create the distrust.

A phenomenon studied in depth by computational folklorist, Timothy Tangherlini, who describes this behavior as a narrative framework. He studied online behavior among those who engage in viral, internet-driven conspiracy theories, and identified patterns of groupthink among internet users, by focusing on the growth and development of conspiracies.

He notes that rather than any one website, or any one social media source, it is the interaction of multiple sources of information, superimposed upon each other in a specific pattern, which transforms an online conspiracy theory into something more.

“You’ve got these [multiple] domains that wouldn’t really interact, but they have alignments between them and those became important”, Tangherlini said. The connections between the sources, the patterns through which people jump from website to social media feed, or from website to website determine the strength of the belief in the conspiracy.

While Tangherlini acknowledges that tracing an individual’s patterns of internet use produces plenty of noise, he argues that through the noise we can find meaningful patterns that elucidate how strongly a person perceives the content consumed online. Patterns that emerge by analyzing multiple, disjointed points of interaction over time, and charting the unique structures and relationships.

A person who reviews the World Health Organization’s (WHO) guidelines on wearing masks online, who then goes on to read online content about oral, fungal infections secondary to mask use may be less compliant with mask guidelines than someone who reviews the WHO guidelines but then researches tourist destinations that have the best COVID-19 protocols set in place.

The predicted behavior – that person’s belief in the importance of wearing masks – is seen not through the websites visited, but in the pattern of traversing from one website to the next.

Narrative frameworks will become increasingly important as healthcare becomes more digital and healthcare trust becomes more decentralized. New social pressures have started to emerge, including the heightened awareness of racial injustice within healthcare, all of which will play a large role in dictating patient behavior.

Studying how patients consume content online and making meaningful extrapolations from those patterns will become essential aspects of patient care.

When we study patient behavior on the internet, particularly their patterns of online consumption, we understand how they perceive their health. How people use the internet affects how they learn from the internet – what they trust – and eventually the interaction between a patient’s experiences in healthcare and his or her internet use impacts individual patient decision-making – which in aggregate impacts healthcare outcomes.

Something healthcare policy experts should quickly realize. One of the major metrics healthcare policy wonks focus on is the cost curve, a measure of the amount of time and resources needed to improve patient outcomes. The cost curve assumes that the more time and resources expended, the better the patients’ outcomes. And for our economically constraint healthcare system, we strive to improve outcomes while reducing time and resources expended – bending the cost curve to be as efficient as possible.

Insurance policies are created based upon this premise, which should now account for the time patients spend online consuming healthcare content. The Annals of Internal Medicine found that the average patient encounter lasts sixteen (16) minutes, and the firm, Digital Information Watch, found that people spend on average one hundred and twenty-six (126) minutes online daily.

Insurance companies could glean meaningful information about patient adherence or of the likelihood of medical complications by studying the patterns of online consumption, and by correlating particular patterns of online use with better or worse outcomes – subsequently using that information to allocate additional time and resources to patients who may be at higher risk.

Going forward, healthcare will be more decentralized and populist – and increasingly influenced by popular healthcare trends online, swaying patient behavior. Until we develop frameworks that study patterns of online consumption alongside healthcare outcomes, we can only describe such phenomenon in broad, overarching terms.

Not in the granular, detailed context needed to meaningfully improve patient care.

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Vaccine Passports: what we need to know

The COVID-19 pandemic has killed more than half a million people in the US and has seriously impacted our daily lives. The granting of Emergency Use Authorizations for COVID-19 vaccines has been a game changer in helping to reverse the pandemic onslaught. Demand for the vaccines currently far exceeds supply nationwide. They have become the golden ticket that can transport us back to a time when routine activities, such as attending school or taking vacations, didn’t seem fraught with danger. What’s the best way to go about re-establishing these activities? One idea that’s getting discussed seriously is giving those who have been immunized a vaccination passport (VP).

What is a vaccination passport?

Let’s start by clarifying some terminology. VPs are documents that show that someone has been given a vaccine(s) and is therefore presumed to be immune from getting and sharing that disease. These are distinct from diagnostic tests to determine if a person is or is not infected with a particular virus (PCR and viral antigen tests) or has been exposed to a virus (antibody tests). VPs are the modern day equivalents of the “letters of transit” that played a key role in the film Casablanca. They’ll enable you to travel freely.

Why give vaccine passports?

Vaccinated people are unlikely to transmit the virus that causes COVID-19 with others, though this has yet to be definitely proven. So, what’s the primary rationale for giving vaccination passports? It seems the goal is to incentivize people to get vaccinated. Folks might be more likely to seek out the vaccine if it bestows upon them certain privileges, such as being able to travel freely. While the idea might sound appealing at one level, the road to vaccine passports is pockmarked with political potholes and littered with logistical land mines.

Administrative issues

There are a lot of important questions that need to be answered before VPs can become widespread; it’s unlikely there will be a “one size fits all” solution. What might VPs look like? Pieces of paper (that could easily be lost or counterfeited), or a digital key or document you store on your smartphone (that many older folks still don’t have)? If you lost one, how would you get it replaced? Would your vaccination records be tied to your other medical records, and if so, what kind of privacy and security protections would be needed to safeguard your data? How would the passport administrator verify that you got vaccinated in the first place? Who is responsible for correcting any errors that crop up? Given how much we’ve struggled as a nation to simply solve the scheduling of vaccinations, VPs might be significantly more difficult to manage.

Who’s going to run the program?

A coalition of health tech leaders (including Epic, the Mayo Clinic, Microsoft and Salesforce) has started the Vaccination Credential Initiative to create an internationally accepted digital health card. Its vision – as stated on its website – is “to empower individuals to obtain an encrypted digital copy of their immunization credentials to store in a digital wallet of their choice. Those without smartphones could receive paper printed with QR codes containing World Wide Web Consortium (W3C) verifiable credentials.” Some European countries (e.g. Denmark) are working on developing their own immunization passports, and the President of the European Union Commission has voiced support for them.

We already have a hodgepodge system designed to keep folks with COVID-19 from traveling. Many airlines are requiring proof of non-infectivity to board a plane – these are distinct from VPs. The methods adopted vary from airline to airline: United uses Travel Ready Center, American uses VeriFly while others use Common Pass. Saga cruises are the first in the UK to demand proof of vaccination, but not everyone is on board with the concept. The World Travel and Tourism Council stated its opposition to allowing travel only by those who have been vaccinated, on the grounds that it is discriminatory.

Discrimination concerns

The concept of gaining advantage from one’s immunological status is not a new one. In New Orleans in the mid 19th century, great economic value was attached to those who survived the onslaught of epidemic waves of yellow fever. A mix of structural racism and a system valuing “immunocapital” ranked men and women highly if they were yellow fever survivors. Those that had not had the disease yet found it difficult to obtain work or obtain credit and women could not marry. Slaves were similarly revalued, with larger assessments attached to survivors. This legacy of viral discrimination casts a long shadow over current discussions surrounding vaccination passports.

Also problematic is the fact that not everyone will be eligible for VPs. Some people can’t be vaccinated for medical reasons but would still like to participate in whatever activities the passports enable (such as travel opportunities). These individuals will likely file complaints if they are denied VPs, arguing that they’re discriminatory in nature. Vaccine opponents will no doubt also file lawsuits seeking to block the use of VPs, claiming they represent an attack on their freedoms and personal choice.

Others may be shut out of VP programs because they don’t have the computer skills to register online, a problem that’s turned out to be widespread with the vaccinations. Don’t have any ID? In some places this prevents the most vulnerable from getting the COVID-19 vaccine, and therefore VPs as well. Many Black and marginalized communities are already deeply suspicious of the medical establishment, and wary of receiving a COVID-19 vaccine. Restrictions that prevent these groups from participating in various societal activities because they don’t have VPs will echo the Jim Crow days of poll taxes and literacy tests that were required to vote.

Enforcement issues

VPs bring up a similar issue as mask mandates: who is going to enforce them? It is one thing for a cruise line to do so, since reservations are required and extensive paperwork needs to be filled out in advance. Who is going to keep non-vaccinated people out of restaurants or concerts that require proof of vaccination? We’ve already seen anti-maskers storm department stores, ignore requirements to wear masks on planes and even kill a security guard who confronted them.

Black market for vaccine passports

Many airlines are now requiring proof of a negative COVID-19 test before they will let their customers fly. This has led to a black market for fake negative COVID-19 test results for those who are looking to game the system. Similarly, bogus cards claiming that the cardholder was exempt– for medical reasons – from having to wear a mask, have been manufactured and distributed. It’s not hard to imagine that a similar market will emerge for VPs.

Overcoming vaccine hesitancy

Given the multitude of issues and concerns listed above, moving forward with issuing vaccination passports seems highly problematic. If the primary purpose of having VPs is to drive up immunization rates, that can be better accomplished by running public service announcements and ads illustrating how liberating it is to start doing normal activities once vaccinated. A nationwide campaign to do just that is already in the works. I personally can think of a better use for the time and money that will be spent on establishing VPs: use them to focus efforts on overcoming vaccine hesitancy in concert with combatting the high tide of online vaccine misinformation and disinformation.

Source: Technology Networks

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