the digital feudalism of covid vaccines

I’ve written a lot about my work with students on digital literacy and the transition of writing to a digital space. As a college professor, I am most concerned with the learning that happens in higher education, working and thinking about the relationship between the classroom, the expectations of the academy, and the expectations of the world outside the classroom. I’m a big proponent of helping students become truly digitally literate so that they can participate fully in our democracy. The digital literacy of older Americans has never been part of my own research, although I have certainly followed the discussions around access to devices and to the internet, the sharing of misinformation on social media, and more. At no time, however, have the disparities between the digitally literate and the digitally unprepared been more apparent than during our COVID-19 era.

While none of this is an original experience, I wanted to share, visually, a look at navigating COVID-19 vaccinations in the state of Pennsylvania, specifically.

When I was playing around with a title for this post, I debated:

• digital anarchy

• digital adhocracy

• digital chaos

• digital micro nations

I decided on digital feudalism as the best way to capture both the ad hoc, arbitrary, but uniquely geographic nature of trying to schedule a COVID vaccine. We are limited (mostly) by the geography of our states, which means that more than ever, we are state citizens rather than national citizens. Within those geographic boundaries, then, COVID vaccines are further subject to the whims of individual organizations distributing them and the technological disparities created by the web developers in each organization’s registration site. It’s feudalism wrapped in layers of feudalism.

Our large extended family has been working to secure vaccinations in four different states for a multi-generational group of: in-person school teachers, older family members, family members with health conditions, and essential workers who have worked with the public throughout the pandemic. Each of these individuals meets the requirements for vaccine eligibility in each of their states. However, as we try to help one another, it has also necessitated understanding the differences between NY, NJ, PA, and NC.

Currently, we are trying to secure appointments for my retired parents who reside in Central Pennsylvania. While they are very technologically literate and have access to internet and various devices, they had decided to wait until their local health care system had vaccines. They have spent the majority of the pandemic isolated, at home, avoiding risk, with the notable exception of a weekly grocery trip. Within their self-created bubble, their risk has been relatively low. We have not gathered as a whole family since Christmas of 2019 to avoid exposing them unnecessarily. When I, myself, have had a chance to see them, it has been masked and outside (including an incredibly chilly 25 degree driveway Christmas). Our goal: to avoid unnecessary risk at all costs until all the adult members of our family have been vaccinated. My parents have been relatively at peace with waiting for a vaccine. They pivoted their regular activities: scholarship, writing, church, weekly Bible Study, classical music concerts, lectures, and art activities quite efficiently and seamlessly online.

However, due to a bad combination of snow, ice, and what we’ll call the unfortunate shoveling incident of 2021, a broken arm means that my parents will now have to break their isolation bubble to interface with regular doctor appointments and physical therapy.

So, we entered into the fray of trying to secure vaccine appointments in Pennsylvania. While I am not solely responsible for this task (mom and dad are also on the case), I have spent significant time trying to track down appointments over the last week.

I’ve found the following 8 elements crucial to being able to navigate a confusing and contradictory system:

1. A stable and consistent internet connection—this is not a given in rural areas of the US, including Pennsylvania;

2. English—almost every site I have visited for Pennsylvania is written entirely in English with no translation / alternative language options available, yet Pennsylvania has a growing population of multilingual residents;

3. Social media accounts to be able to monitor real-time updates—many seniors and at-risk individuals do not have social media accounts;

4. A flexible work / at home schedule that allows for near-constant screen time—those relying on family members to make appointments for them need family members who are working from home, not jobs where it’s impossible to monitor social media and access the appointment registrations online;

5. Digital literacy—the ability to navigate different browsers, identify problems, and figure out the quirks of different online sites;

6. Speed: the ability to very quickly navigate through complex and different registration processes before someone else who is vying for the exact same appointment slot;

7. Insomnia: many of the appointment times are dropping late at night or early in the morning so the failure to get a late night appointment means also having to get up early to monitor appointments;

8. And, most frustrating of all, luck.

Each of these elements is, in short, a problem when you consider a wide-scale roll out in a rural state. So, let’s take a look at what trying to secure an appointment looks like in real time:

Mapping Vaccine Locations

This is a map of Pennsylvania vaccination sites provided by the PA Department of Health, available on their website: https://www.pa.gov/guides/get-vaccinated/

Each blue dot represents a vaccine provider. Each vaccine provider has a separate phone number, website, registration process and separate rules about who can be vaccinated at this time, given the limited vaccine supply.

In response to criticisms that it has been difficult for people aged 65+ to schedule appointments, Pennsylvania released this phone number to call for assistance: 800-753-8827. When I called it, they offered to put me on a list for people who didn’t have the internet and said that someone would call next week to try and help. Since we have multiple secure ways to connect to the internet, I declined to put my parents on the list and moved on with my search. They then referred me to this map (which I had already found).

Multiple problems here:

1. There’s no common site for vaccine registration. Instead, you need to negotiate each individual provider’s registration process. This might include: a phone call, a wait list, already being a patient, random internet sign ups, creating multiple new accounts to get a link when vaccines are available.

2. Each provider has a separate process AND requires different information AND has different eligibility requirements. One site might be vaccinating everyone in 1A plus seniors over 65. Other sites might be vaccinating only 1A and those over 75. Another site said it was vaccinating everyone in 1A plus anyone over 65, but when I tried to fill out their form, there was no eligibility for 65+. That meant there was no way to get around the eligibility checklist which contradicted the eligibility requirements on the same page.

3. On one site, you might need birthdate, address, primary care physician information, insurance information. On another, you might need some of that information but not all of it. On another, you might be asked information like: other vaccines received, medical conditions, etc. Also, you need to be able to very quickly discern which information is required versus which fields asking for information can be skipped. Why? See #4.

4. When clicked, the appointment times available on many sites are not “held” while you fill out the necessary online forms asking for information (again, different for every site, see #3 above). You are racing against anyone else who clicked the same time. When you get to the end, you might have scored an appointment or you might find that even though you thought you were filling out the information for a 10:45 a.m. Tuesday slot, that slot has already been taken (by someone faster than you at navigating multiple pages of forms). You have to go back to the beginning. Internet savvy users, in some cases, can pre-populate this information. However, some web pages block that. Again, there’s no universal standard here.

5. I do not realistically see any way to navigate this system without the Internet. While the PA Department of Aging offered to put us on a list, they are not withholding vaccines for that group. Therefore, whoever is calling seniors without internet access will be navigating the same system that everyone else is already trying to game.

6. UPDATE: “Another of the new state guidelines requires all vaccine providers to have a phone number for people to schedule vaccination appointments.” (“New Pa. DOH Order”) This is a good development, but only if the pharmacy / hospital systems create a block of appointments dedicated for phone calls only.

Gaming the System: Real-Time Crowdsourced Information

Facebook has become an ad hoc organizing site. Groups for NJ and PA provide real time information about what sites have opened registration and when. On Friday night, 2/12/21, Rite Aid Pharmacy dropped multiple appointments across PA and NJ at 11:50 p.m. They repeated the process on Saturday. People gathered digitally beginning at 11 p.m. on Sunday night, 2/14/21 to secure new appointments. They waited for appointments to appear while sharing the experience in real time via the Facebook group. However, no appointments appeared on 2/14/21 or 2/15/21. The group anecdotally predicted that new spots would be available at 5 or 6 a.m. the next morning.

While that did not happen, it’s a good example of how people are attempting to game the system by anticipating the release time of appointments and tracking the past release times of appointments. As I have been writing this, one of these sites has created a crowd-sourced document tracking when different sites release new appointments.

On these sites, people share strategies and tips for securing spots in a heated race to secure appointments: how to fill out forms ahead of time, what lines in the form to skip to get through the paperwork faster before the appointment slot is taken. Someone discovered that there is a problem with refreshing the Weis Market page. You need to close the window and open a new one. Also, it reportedly works best on Chrome. Another poster discovered a glitch on another site where a link added an extra underscore that had to be manually removed in order to get an appointment.

These sites include guides written by members, trying to help one another out. They are also evolving. The NJ Facebook group as of this past weekend (2/14/21) has now developed county-specific pages to help people in NJ.

An additional off-shoot of this Facebook page is that a group of volunteers is now working to schedule appointments for people who are having trouble. They are unpaid, unaffiliated with hospital, health, or governmental organizations. Instead, they have jumped in to try and fix the problem.

Multiple problems here:

1. Access to social media accounts to follow real time updates;

2. Real time updates lead to near-immediate bookings for all available appointments, shutting out people who aren’t “in the know”;

3. No universal standard has been applied to the collection of data, so users are subject to sharing quirks and “tricks” for individual websites all of which could lead to successfully booking or losing an appointment in a fast-paced, real time booking race;

4. Crowdsourced information is not always accurate;

5. Facebook pages, in particular, are subject to clutter as people post their experiences, frustrations, and pleas for help mixed in with the real time information necessary to jump on immediate releases of appointment times;

6. Should public health be a game? All of this information, while well-intentioned and helpful in securing appointments also means those who don’t have access to the information are left out of the system.

Like the Facebook groups, @C19VaxxUpdates provides a running list of times when different NJ sites open registration in real time. The national pharmacy chains seem to be on a linked schedule, so the real time data for CVS and Rite Aid pharmacies provided here has also been true for Pennsylvania.

Thanks to information at @C19VaxxUpdates, I was able to secure an appointment for my dad. However, I was able to secure that appointment by sheer luck. I happened to be up at midnight, scrolling through social media when I saw that appointments were available. I hopped right on it. By the time I made it back to the beginning of the registration process for my mom, all available appointments were taken.

While the image here, of the Wegmans Pharmacy COVID-19 Vaccine Scheduler shows “all available appointments are reserved at this time,” the real story is at the top of the screen. I have 14 browser tabs open: the NJ and PA Vaccine Facebook groups; the @C19VaxxUpdates Twitter account; the vaccine scheduler pages for Giant, Rite Aid, Weis, Wegmans, 3 local pharmacies and 2 local hospitals; the PA Vaccine map; and the Vaccinate PA website (more on this in a moment). For some, navigating multiple tabs is easy. For others, moving quickly between different tabs can be confusing and difficult. Again, there is a great presumption of digital literacy and fluency expected by this system. The system assumes that you will move fluidly from feudal online state to feudal online state and quickly acclimate to the new expectations on each site.

Rite Aid has no appointments. Despite crowdsourced information about possible appointments dropping at 11:50 p.m. and 5 a.m., neither theory has proven true today.

For people like myself who live out of state, there’s an additional layer of complexity. I grew up in Northeastern Pennsylvania, but my parents now live in Central Pennsylvania, an area I am only familiar with as a visitor. Rite Aid will search for available stores within a 50 mile radius of a zip code. Giant, in contrast, will only search 10 miles. In rural Pennsylvania, that means having to search for and prepare multiple zip codes beyond a 10 mile radius all of which people in PA might consider “local,” but whoever created the Giant vaccine scheduler did not. (Side note: In addition to my many talents, I am now an expert in Central PA zip codes.)

The largest health care provider in the area, the Penn State Healthcare System, has no vaccines available. They are listed on the PA map as a vaccine provider.

Another vaccine provider in the area has vaccines, but only if you are a current patient. This has been true for multiple blue dot sites. They will provide vaccines only to current patients.

In contrast to the state’s map, this volunteer-created site provides county-by-county information updated daily about vaccines available where and when. More organized than the Facebook pages, this systematic collection of vaccine information is a great source to try and navigate the multiple providers.

The Many Stories of COVID-19

There are many stories of COVID-19, some already written, some yet to come. In this visual narrative, I’m seeing several:

1. The creative passion of people willing to step in and help where the system is broken;

2. The digital literacy needs within our senior populations;

3. The continued need for clear and specific digital standards in information gathering and website creation;

4. The failure of technology as a “solution” in at least two situations: public education and public health, both of which have been essential during this pandemic;

5. The continuing inequities of public health;

6. The rewriting of public health as a private commodity (the distribution of the Polio Vaccine vs. the COVID-19 Vaccine);

7. The failure of government to plan for and create supply chains with well-thought out logistics for distribution (again, the distribution of the Polio Vaccine);

8. While Twitter has become a favorite of the political establishment, it’s also widely out-of-touch with the many (often senior) citizens who do not have Twitter and don’t rely on it as a source of information. The government’s over reliance on social media as a formal vehicle for information is problematic (official updates coming via social media and internet sources rather than other forms of communication—this is different than informal social media / crowd sourcing);

9. Information / Connectedness / Technological Agility as power—those who were able, got appointments.

What Could Have Been

There are so many different ways this could have gone. For example, we could be using empty school buildings where students are currently learning online to distribute vaccines according to priority. We could have used the Defense Production Act to create the vaccine supply needed. We could have created a corps of paid citizens (addressing the unemployment crisis) to run those sites, to help people access them, providing transportation where needed. We could have created a corps of paid citizens to help address the technological inequities if internet usage was needed. We could have worked together.

I keep thinking back to the polio vaccine. If you haven’t read it, I highly recommend Polio: An American Story by David Oshinsky. It’s a fascinating story of how the United States met the public health crisis of polio in a manner vastly different than today’s COVID-19 crisis. It’s a story of American ingenuity, of public service, of science for knowledge rather than science for profit. It’s a story of us rather than me vs. you. Interestingly, it’s also a story of how many of today’s seniors who are being shut out of the COVID-19 vaccine process benefited from a very different process that vaccinated them against polio. It’s a story of conquering a public health crisis rather than betting on an unequal technological lottery stacked in favor of those who can that allows me to get a vaccine and you to wait.