When Reddit Comes For Healthcare

We all heard about the Gamestop story. Where a group of Reddit users worked together to adjust the price of a stock for a company most would have assumed had gone the way of blockbuster years ago.

We were shocked to see the power of reddit as a social media platform to mobilize such financial influence. We considered it David vs. Goliath. We positioned it as the common man fighting against the powerful and well connected. Inevitably, we oversimplified the story.

We like simple narratives because they are easy to digest. But the reality is far more complicated and nuanced. Reddit is not the home for the little man, it is the home for future platforms of communication, growing ever more sophisticated and powerful.

The fact that Reddit maintains this common man allure is a testament to its ability to maintain a counter-culture vibe, despite its tremendous cultural influence.

Reddit has become one of the most powerful platforms for mass communication. And what happened in the financial world can just as easily happen in the medical world. The fact that it has not yet only makes it all the more inevitable.

On Reddit strangers across the country discuss their medical conditions, their views on public health policy, and, most of all, their gripes and concerns about the healthcare system. The discussions are, for those newly acquainted with Reddit, surprisingly sophisticated, indicating the average Reddit user has a high level of medical knowledge. Well beyond what many policy experts would presume.

During the COVID-19 pandemic, policy experts emphasized communication, believing that effective communication with the public would lead to better adherence with the social distancing guidelines.

They were right, in a way, but they were also wrong, in many other ways.

When you review many of the most prominent subreddits that discussed COVID-19, you will find numerous examples of what the policy experts would call effective communication. People sharing academic studies, debating the merits of local and regional public policies, and making informed decisions based upon the available science.

Policy experts were correct in their understanding of the power of communication, but they miscalculated how the Reddit population would shift communication from policy experts to their inner circles.

The dialogue on Reddit is largely among themselves, mostly exclusive to its own community. What the Reddit community sought from the policy experts was integrity and consistency.

This is why Dr. Tony Fauci is heralded as a modern-day hero and Dr. Deborah Birx is relegated to the sidelines. Prior to the pandemic, both physicians were world class infectious disease and public policy experts. But Birx did not maintain a constant, public perspective on how to treat the pandemic, and largely remained silent when former President Trump espoused anti-scientific rhetoric, losing credibility among Reddit users.

Fauci, on the other hand, was largely and consistently vocal. That ran him into a lot of hot water publicly, but on forums like Reddit, that made him an absolute authority. And he remains a trusted voice among prominent Reddit forums.

This trend highlights the future of patient empowerment, and how patients will continue to understand their health. Reddit is at the forefront of this new trend in patient communication, pioneering the way forward one post at a time, through the myriad of subreddit forums.

The transfer of trust has shifted from the patient-physician relationship to the patient-patient relationship.

Patients are now more intelligent and self-sufficient about their medical care than ever. They question the medical advice received by their physicians on the forums, they gripe about the lack of communication with their physicians with each other.

Reddit is unique from forums like Facebook because you can communicate with people well beyond your traditional network. In Facebook, you have to join specific groups, and even then your identity remains public. With Reddit you have a unique combination of privacy and autonomy that has somehow translated to more honest conversations with a greater degree of virality. A trend that caught even the founder, Alex Ohanian, by surprise as he revealed in a recent Axios interview.

Initially it would seem more likely that using a code name and hiding behind hidden profiles would lead to less honest conversations. But Reddit has balanced the line between autonomy and honesty in a way that gives it a sense of virality not seen elsewhere.

Perhaps that is why Reddit is responsible for rapid mobilizations like what we saw during the Gamestop episode. It is less regulated than other social media platforms and more politically charged. People can maintain their most idealistic persona and galvanize that similar ethos in others.

Which means there a number of ways in which Reddit can influence healthcare.

In spending time with many Reddit users across multiple forums, I believe it is more likely that Reddit’s influence on healthcare will be a series of smaller events, in which subsequent events refine the mobilization efforts from earlier events, strengthening the Reddit healthcare mobilization play book.

The first series of events will come through forums in which the disparity of trust between the healthcare industry and the Reddit forum is the greatest. In which patients trust the reddit forum significantly more than they trust their traditional healthcare experiences. A disparity that was exacerbated during the pandemic and seems poised to continue as healthcare transitions away from traditional infrastructure and more towards digital platforms of engagement.

Throughout the pandemic, people developed a sense of trust within their subreddit communities. Moderators who run these groups have a sense of pride in their responsibilities and actively ensure the integrity of the conversations. Users who run afoul of the moderators often find themselves with limited access or kicked out of the groups entirely.

The communities that have the best interaction among the moderators and trust among the users will be the likely forum through which the first mobilization efforts will come.

It will be largely retaliatory in nature, as Reddit users are largely bound by their countercultural, anti-authority views.

But once the pandemic has run its course, and people are resuming a sense of normalcy in their lives, they will remember the experiences of the pandemic, they will remember the sense of unfairness they experienced within the healthcare system.

This is when Reddit users will exert their influence on healthcare, and from their desktops or mobile phones they will exert their voice. The powder keg has already been filled to the brim with emotional gunpowder produced over the course of the pandemic, post after post.

The triggering event will be a policy or law that is perceived to be disregarding or insulting the hardships the public endured during the pandemic, or hurting their recovery efforts following the pandemic.

Will it be politically charged towards healthcare regulations, or will it come out in support for new legislation changes?

Healthcare curiously became less regulated during the pandemic. Reimbursement exemptions were unveiled in ad hoc ways, policies were enacted and just as quickly redacted, and guidelines were issued only to be reissued in a never ending series of reiterations. The whole time was chaotic, to say the least. But within that chaos, there was an undeniable loosening of the many regulatory processes.

Post-pandemic those processes will inevitably tighten up. Likely in ways that run afoul of many of the same people who were disproportionately affected by the pandemic. Emboldened by the fragility of the healthcare system, many may feel justified in reacting against a return to the status quo.

Will it be related to the financial pain or perceived sense of injustice in healthcare? As many have learned that healthcare justice is intimately linked with social justice.

The nation is still fresh from a volatile 2020 in which we had an unprecedented number of riots across a whole range of issues. The racial and economic disparities made apparent during the pandemic, whether it was mortality or vaccine availability, have only solidified the notion that healthcare and civil rights are inextricably linked.

It may be very likely that healthcare rights and access becomes an issue for grassroot advocates. The Black Lives Matter movement had a very strong presence on Reddit and the on-ground protests often mirrored the lively discussions transpiring on the forums

While we may not be able to predict how exactly the first healthcare movement on Reddit may look, we have a clear understanding of the parameters that will incite the movement. Once the opportunity comes, it will reveal the hidden power of Reddit to influence healthcare.

Impacting the healthcare community the same way the GameStop movement impacted the financial community.

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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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