COVID-19 treatment info is poorly accessible and difficult to read on State, Territory and DC websites
Immunocompromised advice tends to get redirected rather than answered on these websites
A University of Rochester research study published February 21st found that "COVID-19 treatment information on US public health websites was poorly accessible, particularly for people with low literacy or limited English language proficiency. Accessibility is decidedly worse in states and territories with Republican governors.”
Here’s the data so you can see for yourself:
“Life-saving oral and injectable antiviral therapeutics are available to treat non-hospitalized patients with a high risk of COVID-19 infection. Yet uptake of treatments is suboptimal and inequitable,” concluded University of Rochester Medical Center researchers Cody Eckert; Mechelle Sanders, PhD; Rhea Bharadwaj et al who did not include phone information line evaluations in their research.
Bivalent booster question - the warm up round
As I wrote about my own difficulties in navigating the CDC website in October after being exposed to COVID [which I have not, to my knowledge, gotten] I figured I’d run my own micro comparison study. Kind of like a warm up test
Using the Medicaid nurse line I tried to get an answer to a legit question. “What’s the deal with 2nd Bivalent boosters? Are they being given to high risk populations like immunocompromised people yet?”
To be clear: I wasn’t looking at COVID “treatment” which is what the study used as the yard stick to compare. Just wanted to find out if a new booster was on the way.
Since the option of getting a second flu shot had just been announced this isn’t an unreasonable question to ask. Here’s what happened when I hunkered down to try and figure out whether or not I could get get a second Bivalent shot using Colorado’s Medicaid phone line:
After just one wrong department, two phone trees and only one NATO phonetic alphabet spelling of my last name, I was speaking with a human. Real. live.
The Colorado Medicaid nurse line wasn’t initially sure how to advise an immunocompromised person I appreciated the care she took in assessing where I was in my booster cycle “lets say September fourth, okay?” I said apologizing for my two vaccine (yes I’m on my 2nd now) cards not being readily available.
“Two months after the first booster” she said initially. When I asked if she was sure this was in reference to the second Bivalent she said this was something she hadn’t heard of yet and went to the CDC website to find out. “There’s just one Bivalent booster” she then confirmed.
“Thanks” I said, relieved there was, indeed, just one answer and it was an answer I was actually able to get. Eventually. Took some work but I did manage to get an accurate response and the Medicaid nurse under informed on immunocompromised needs but determined to find the answer which ultimately she did using the government website.
Bivalent info the immunocompromised accessibility online
According to the the COVID19.Colorado.gov website, “for most people aged 6 months and older who get Moderna, a primary series is two doses. People who are moderately to severely immunocompromised get three doses in their primary series,”
Huh?
The conversation I had with the Medicaid nurse, with all it’s phone trees, nato phonetics and hold times was a lot more reliable, despite her having to finally use the Centers for the Disease Control and Prevention (CDC) to find and ultimately confirm information accuracy.
Kudos to South Dakota
For comparison I visited the website ranked “very easy” by the Rochester team — the South Dakota website which evidently bucked the trend the research had found which is that usually Republican states and less accessible websites.
All the “immunocompromised” information redirected me to an external link which lead directly to the CDC website — the same resource used by the Colorado Medicaid nurse. Another click and another click.
4th Dose Moderna or Pfizer-BioNTech
UPDATED (BIVALENT) BOOSTER
At least 2 months after 3rd dose
Still no mention of an eventual second Bivalent but at least the advice was consistent at this point.
“We found that website navigation was easier when COVID-19 treatment information was displayed on the website rather than providing hyperlinks to external federal government websites,” the Rochester team pointed out and I am inclined to agree.
It didn’t do much for the immunocompromised but a lot of effort had been dedicated to making health information accessible to all kinds of website users. There were downloadable illustrated informational fliers and links to American Sign Language videos.
As I am not a resident of South Dakota and do not participate in their Medicaid program I made no attempt to cross compare with their phone line and concluded my warm up round.
Circling back to the focus of the Rochester study
Now that I was warmed up I circled back to the original focus of the analysis and purpose of the study.
What would my user experience be if I tested positive for COVID and needed to find treatment? How accessible or inaccessible for the website be? Which states would have easy to read and navigate websites and which states would have websites that are more difficult?
What using CO’s online resources to find COVID treatment is like
Returning to the Colorado website I grabbed my pickax and hit the trapper trail in search of what these Rochester researchers had set out to find: how easy or difficult would finding COVID treatment be?
An interactive display map indicating where “test to treat” resources could be found throughout the state. I called a Denver place on Federal Blvd and got rerouted to the Denver Health line.
I explained who I was —a reporter doing research— and asked where I’d be routed if I needed COVID treatment. In a routine similar to the one in the warm up round I was offered the Medicaid Nurse line.
As each pharmacy was listed according to what COVID treatment was available specifying “Paxlovid, Molnupiravir, Renal Paxlovid” it wasn’t idea if you wanted to actually find a location that might/might not be there.
Maybe map navigation isn’t everyone’s jam. I personally find it quicker when I can enter my zip code and see listings according to distance proximity.
I was therefore pleased to discover the “Test to Treat” section includes a spreadsheet by county. Pharmacies in the list included the Federico F. Peña Southwest Family Health Center —the Denver Health affiliate that routed me to their nurse line. The website said it was updated every Wednesday. It also had an actual section you could go to find out which COVID treatment was applicable and why.
Colorado’s Types of Medicine section
I was pleasantly surprised to discover Colorado’s treatment section included a “Types of Medicine” chart user could use to determine which COVID treatment is right for them. It even specified “Convalescent Plasma” as the best option for people who are immunocompromised. Information that is both relevant to COIVD treatment AND the immunocompromised — this is patient information gold!!
This was an opportunity to dive back into the phone tree. Reaching out to the Federico F. Peña Southwest Family Health Center again I got routed to the pharmacy and said I had a research question and needed to know if Convalescent Plasma was available at their pharmacy.
“Never heard of it” the pharmacist told me.
”It’s the Colorado state website’s recommended COVID treatment for people who are immunocompromised” I clarified
”The only one I’ve heard of is Paxlovid” she said “but it sounds more like a hospital infusion type thing to me” she said, which makes total sense.
Returning to the website I wanted to see if I’d missed something, “There are different types of medicine that can treat or help prevent COVID-19,” Colorado’s Types of Medicine website section explained,
Guess the immunocompromised slant is that what may initially resemble informational gold is, in actuality, fools gold.
Here’s specifically how the Colorado website explains it including it’s relevance to the immunocompromised
“Antiviral medications can be either pills you take by mouth or IV infusions. They target specific parts of the virus to stop it from copying itself.
Convalescent Plasma is plasma from individuals who have recently recovered from COVID-19 infection. The plasma, or liquid part of the blood, contains antibodies against the virus. These antibodies can help neutralize or kill the virus to help you recover. It is authorized only for people who are immunosuppressed or are on immunosuppressive treatments. Research is ongoing to better understand the benefits and risks of this treatment.”
The Rochester team had ranked Colorado’s website as “difficult” and specified the site was assessed “for people with low literacy or limited English language proficiency.”
When I scrolled to the top of the COVID treatment I found this information —including a section on what to expect at your appointment— was available in Spanish, Vietnamese, Chinese, Somalian, Arabic and Amharic. A notice at the top said the website had been updated on February 15, 2023.
Because the article the research was published in was accepted for publication on January 4, 2023 and was published February 21, 2023 my hunch is that Colorado’s COVID treatment information was updated while the study was in peer review and the rating reflected an assessment of an earlier version.
That said, it certainly wasn’t perfect since it is recommending treatment options for high risk communities without guidance on where to find them.
While I don’t have expertise in this area, its accessibility to non-native English speakers seems intentional. Different languages are provided at the top of the page.
An immunocompromised ESL speaker with COVID would have as much trouble as I would accessing the optimal treatment on the website and would most likely end up on the Medicaid nurse line.
South Dakota’s COVID treatment info is “very easy” to find
When I went to South Dakota’s COVID website to find treatment for COVID I realized immediately why the researchers had expressed so much enthusiasm. An illustrator had created clear printable resources and the website itself linked to the CDC’s Spanish, Karen, Somali and Nepali instruction.
There was also a dashboard with comprehensive community info and charts and multiple attempts to link to information relevant to tribal communities and even an American Sign Language (ASL) video.
What is government COVID info like in your state?
Please share any experiences you have navigating your state’s website in the comments below. Do you feel the ratings in this chart reflect your experience?