I was asked for what I tell people before they see a new specialist for a new icky diagnosis. My top ten tips for being a patient.
1. Bring a friend with you. They’re there to support you, to validate your story, to listen and hear things you might not notice, to provide a second perspective before/during/after.
2. Take notes. At the very least, date, time, place, who you met with, what questions were asked, what answers were given, what tests were taken, and how to find the test results. (This is especially necessary if you are in a crisis situation or the emergency room, but it’s hard to do under those circumstances. Make a habit of it now, and it will be easier to do when you need it most.)
3. Who else can help take notes? Ask the person who comes with you to take notes for you. You’ll have a hard time remembering, no matter how brilliant your memory is. You may want to ask if you can record the conversation to listen to again later, but a lot of healthcare folk are uncomfortable with that, and they don’t know you well yet, so if they say “no” it’s really not a surprise.
4. Ask the doctor to write out or spell words that are unfamiliar to you. Also ask the doctor for alternate words that describe the same idea.
5. Have a list of your questions before you arrive. Prioritize the questions. Pick your top three (because the doctor probably won’t have time for more).
6. Ask people for more question ideas. If your brain is frozen and you can’t think of what questions to ask, try searching, “What should I ask” or “top ten questions to ask about” with the name of your diagnosis. You might also try searching “new diagnosis” with the name of your diagnosis.
7. Use questions to engage & build trust with your doctor. When you do research in advance, some of it will raise questions. If you bring in info to ask about, try asking your doctor questions like, “Is this good information for me? Why or why not? What would you recommend instead or in addition?”
8. Ask the right question for the right doctor. Keep in mind that you’ll probably see a whole bunch of different health care folk, and not all of them are good at answering all questions. If you aren’t getting the answer to a question that is helpful for you, ask “Is there someone else of whom I should ask this question?”
9. Read the fine print, and read your records. If you need extra time to read it or think things through, you should have the right to take whatever time you need. You also have the right to ask for copies of your medical records, and there shouldn’t be a charge, or only a minor charge. If you don’t have the time or energy to read your records (I totally get it, it’s exhausting), do you have a trusted friend who can help you review these? Mistakes creep in under the best of circumstances, and things go better when you catch errors quickly.
10. Find a patient support group with people who are kind and generous. Being angry is completely okay as long as they don’t get stuck there. You don’t want a group that spends a lot of time censoring discussion, but you also don’t want a group that lifts up misinformation. It’s okay to join different groups until you find the right one for you. You don’t have to talk. You can lurk until you feel comfortable talking. You can search the archives to see if someone else already answered your questions.
Y’all know I have Long COVID, and of course, I’m in several online support groups. Last week I saw a whole spate of news articles with titles along the lines of “simple blood test can tell whether patients will suffer from long covid.” That would be really nice if it was true, wouldn’t it? To me, it sounded too good to be true.
As a librarian, you kind of build up instincts around the information pitched at you. We all sometimes get it wrong, and I don’t always have the energy or time to check out a piece before I post it. Sometimes I post things so I can come back and look at it later. Sometimes I post things I don’t trust just as an example of how bad things can be. I warn people that my posting a link doesn’t mean I endorse it. Sometimes people push back and educate me about how bad something is, and I’m grateful for those conversations. Sometimes I post something and say, wow, this is really bad, and then bots come out of hiding and jump on the post, trying to trick me into getting a conversation going. (That happened last week, and I ignored the ones that used polite language and reported and muted the ones that didn’t.)
Why does it matter?
For this piece, the first time I saw it, I didn’t have time, so I left it alone. It kept coming up, though, and other patients were saying they were going to write to some of the researchers mentioned and find out if they could get the test. There are so many horror stories I see in the LC support groups, of people whose doctors don’t believe them and won’t support them, of people who lost their insurance or their jobs because testing wasn’t available when they caught COVID and they were instructed to stay home, and now the people with the resources don’t believe they are genuinely ill. It seems that people with Long COVID fall into one of four groups: 1) those who tested positive by PCR, and have antibodies (a tiny minority of the community); 2) those who tested positive by PCR but never developed antibodies; 3) those who tested negative by PCR or couldn’t get tested but later were shown to have antibodies; or 4) those who tested negative by PCR or couldn’t get tested and never developed antibodies. Group 4 seems to be the largest group among the Long COVID support groups. Some of the Group 4 folk, like me, were lucky to have a clear documented exposure and were able to get a clinical diagnosis based on symptoms. Most are not.
People did exactly what they were told to do (stay home instead of getting tested or going to Emergency), and now they have been ill for months or over a year, and are suffering while basically being punished for having followed directions. By “punished” I mean they are being denied access to treatment, rehab therapy, specialists, time to rest, accommodations; their insurance is denying coverage; their doctors won’t refer them to treatment; their employers say they are faking it, and fire them; and they are being denied unemployment and/or disability because they are ‘choosing’ to not work. If you can’t prove you had COVID, you also aren’t eligible to participate in many of the research studies, and most of the important research studies on Long COVID are excluding the majority of the people with the condition, who were never able to get a positive PCR test, for whatever reason (access, ability, permission, timing, other). This creates significant flaws in the emerging research around Long COVID, because we have no path to discover what is different about this majority community of people with Long COVID who never tested positive, and we can’t learn if the treatments are different for them. Even more important, if we knew what was different about them, we might be able to predict who would develop Long COVID and protect them. Right now, the only way to be sure you won’t get Long COVID is to never get COVID.
You can see a test that could prove someone has or had Long COVID would open the door to services and resources and legal protections that many are absolutely desperate to receive. I attended an IOSH webinar last week on Long COVID and return to work in which one of the presenters, with deep emotion and expressiveness, said something like, “I don’t understand why we are requiring people to prove they had COVID before we will help them. They don’t want to be this sick.” But, for now, in many places, you still need to be able to prove you had COVID to get help, and there are people hanging on by the skin of their teeth waiting for a test exactly like the one described. That’s exactly the sort of audience that snake oil salesmen look for, desperate people, to take advantage and to find a way to monetize, either by getting them to pay for fake tests or fake treatments or through tricking them into loading pages of bad information stuffed with advertisements, or getting them to actually buy the things being advertised, or clicking through to pages that leave pieces of code on their machine that scrape information about them. Many people don’t stop to think that going for the best information isn’t just about wanting the good information, it’s also a security issue, and potentially a financial one as well!
Is it good, step 1: Who says so? Authorship
So, I wasn’t trusting this, and over the weekend, I took a closer look at the original posting I saw in one of my support groups, which was from a Nashville TV station. Not a source I would normally seek out for cutting edge medical information. Local news sources tend be absolutely brilliant at local news, and not so great with world news. WKRN got their version of the article from a place called StudyFinds, which has the tagline “Research in a Nutshell.” I found another copy of the article posted with substantial edits by the DailyMail in the UK, who at least tried to contact a few researchers to quote, but the DailyMail is, shall one say, not the mostreputablenewssource in the UK? And a tad biased? Although they have been working on their reputation, a friend of mine from the UK still calls it the Fox News of the UK.
Curiously, the Daily Mail version of the article was published with a byline (Mansur Shaheen), the day after the StudyFinds version went live (if their posted dates are accurate). Daily Mail: “PUBLISHED: 17:52 EDT, 16 August 2021 | UPDATED: 18:14 EDT, 16 August 2021”; StudyFinds: “AUGUST 15, 2021.” I took a look and Mansur Shaheen published five articles last Friday for the Daily Mail. That’s a lot. I remember when I used to post five blogposts a week, and how exhausting that was. This piece was the last of four Mansur published for DailyMail on August 16. Yikes. Reading between the lines, it looks like Shaheen uses a strategy of finding pieces from other places and polishing them or revising them enough to claim authorship. That’s probably a really useful strategy outside of academia, but since I am an academic I can’t help but think what my profs would have said if I had tried something like this while in school, or what happens to researchers who take one of their own pieces and rewrite for another journal. This isn’t considered a strictly ethical strategy within the venues for high caliber evidence. It sure is taking me a lot more time just to do this one blogpost.
I’m still debating about whether Mansur Shaheen who writes for the Daily Mail based in New York City is the same Mansur Shaheen who is “Deputy Editor at SB Nation’s Pride of Detroit, Election Reporter for Bridge Michigan, Freelance Journalist,” but it seems likely. I don’t think this is relevant to the rest of the story here, but it just fascinated me to find a Michigan connection while working through this, and it speaks well of his work that Mr. Shaheen is proud of his work and has a strong online presence. But I’ve gotten sidetracked, and let’s get back to the Long COVID simple diagnosis article. In the StudyFinds version of the article the authorship is listed under the generic name of “StudyFinds,” but if you read the whole thing and go down to the bottom, you will find a contributing writer named Mark Waghorn. I couldn’t find much about Mr. Waghorn. There are a lot of people with the same name, several of whom are in high profile positions in other industries (finance, architecture, banking, sales, even a race car driver). I was able to find people named Mark Waghorn who are writers. They might be different people, or they might be the same person, I can’t tell. One is a playwright and another an automotive technical writer, but both are in the UK, so who knows? In any case, that I can’t find much about a writer of that name working in healthcare journalism inspires little if any confidence in the article.
Is it good, step 2: Who says so? Publisher
You can search that title phrase (“simple blood test can tell whether patients will suffer from long covid”) on Facebook and find several different news stations posting their own copies over the past week. All of these places appear to have gotten the article from StudyFinds, so I took a look into them. It’s a pretty good (as in well-camouflaged) click-bait news site, near as I can tell. I want to call them a fake news site, but that isn’t strictly accurate. They mix up a lot of true bits and pieces with hyperbole and misleading headlines and stuff the site full of advertising. They make it really hard to find the actual true bits and they make it hard to get off of their site. Their links keep pushing people to other pages on their site full of other ads. They farm these articles out via newswires where they are picked up by a lot of small local news sites. I’m not saying they don’t have some good information in there, I’m saying it’s hard to get to the good stuff and they are monetizing the audience and manipulating the reader to make more money off of them. This isn’t necessarily a bad thing, it just means you are getting what you pay for. They describe their mission as follows:
“StudyFinds sets out to find new research that speaks to mass audiences — without all the scientific jargon. The stories we publish are digestible, summarized versions of research that are intended to stir debate: We do not agree nor disagree with any of the studies we post, rather, we encourage our readers to debate the veracity of the findings themselves.”
So who are StudyFinds? This is where things got really interesting. My first step was to look for their “About Us” page, who they say they are, their stated mission, and who’s writing for them. They actually have some real journalists as authors, but they also had a bit my radar latched on to which said pieces picked up from newswires and pieces from people who prefer to go nameless would be posted under a generic authorship. Guess what? A lot of their posts are under generic attribution.
I dug a little deeper. In the footer for the StudyFinds site, the copyright line goes to a company called “41 Pushups, LLC.”
Is it good, step 3: Follow the funding
Most companies, well, most legitimate companies, try to choose distinctive and unique names, so that when you search for them, you will find them and not other groups or information. When you search “41 Pushups, LLC” you find an awful lot of articles about how many pushups make for a good exercise program. It’s hard to find the company, but, hey, I’m a librarian.
41 Pushups, LLC doesn’t appear to have an actual official web presence (which is curious all of itself), but they did register their name. It’s curious that StudyFinds was founded in December 2016, and that the company that “owns” them was registered less than a year ago.
The address they are at is “8 The Green, Ste. A, Dover, DE, 19901.” There are a LOT of businesses at this address, or at different suites within the same building. The building doesn’t seem to be that big, but that’s because these are virtual offices. They have a legally registered mailing address in a state with desirable laws, and they can operate a business under those laws while in reality the company could be anywhere in the world. 41 Pushups, LLC appear to be one of the over 250 LLCs sharing a single virtual address in Delaware which are under investigation by the SEC.
Is it good, step 4: Who else says so?
So is the news article totally completely fake? Well, we don’t know at this point in the process. I tried to verify the authority and credibility of the author, the organization providing the information, and failed to find information that would do that to my satisfaction. I tried following the links provided in the article, and that wasn’t useful either. The next step is to try to verify the content of the article directly.
There are a lot of ways to look at this. I started by trying to find the researcher who is cited as having made the discovery, and this time that paid off. Sometimes it doesn’t. Sometimes it isn’t straightforward to figure out which of the people mentioned in the article are the person you want to find. In this the article, they quoted so many different people as having said different things, in the support groups, people were trying to contact any or all of them, or whoever was located near them geographically. Many of the quotes were taken from other articles, and were not necessarily solicited specifically for this piece. This means the effort spent to try to contact the organization or researcher will not only take up valuable energy for no purpose, causing harm for these vulnerable and exhausted patients, it will also take up time and energy for whoever receives the request for information who are likely to not actually know anything about this topic.
You can see some of my search process reflected in a Twitter thread I put together while I was feeling frustrated with all of this. I identified Mark Wills and Nyarie Sithole, both of Cambridge University, as joint researchers on this project, and looked for recent news with both names. I first found a local news report on the topic from Cambridge. Remember earlier where I said local news is really excellent for their own news? I won’t trust a Nashville local news report on science from Europe, but I will trust a Cambridge local news report about Cambridge discoveries. Even better was the next thing I found, which was an official press release from University of Cambridge.
Is it good, step 5: Who has the right to say so?
This is also interesting. You see, the official press release was published under a Creative Commons license. This gives other people the legal right to rework and republish. So far, that would make it seem like what StudyFinds did is legally if not ethically sound. However, there are several different varieties of Creative Commons licenses. University of Cambridge used a CC04 license: you can share and adapt the original, as long as you include “Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made.” None of that appears in the StudyFinds version of the article, at least as far as I could see. I had to close 8 ads before I could try to print a reference copy.
Now, this assumes that the StudyFinds version of the article was actually based on the official press release. What if it wasn’t? As I kept looking, I found an article on this from the NHS, the National Health Service for the UK, but specifically from the hospital involved in the research. This was dated July 18, the day before the U. Cambridge press release (July 19). What makes me think that this might be the original source is that the photos used in the StudyFinds version are the same photos used in the NHS version. There was no license nor copyright statement included in the NHS post. I know in the United States certain types of information produced by the government are created free of copyright. I don’t know if this is true in the UK, but with some more digging I found out about “Crown Copyright,” which sounds similar. I wasn’t able to easily discover if the portions of Crown Copyright which make some information free to reproduce and modify apply to NHS information, but I did find that some NHS organizations apply this to some of their information, with restrictions like these: “Permission is granted to reproduce in any format for your personal and educational use free of charge, provided it is reproduced accurately and not used to mislead. Commercial copying, hiring and lending is prohibited without express permission.”
Is it good? The answer: Part maybe, mostly FAIL
So, there actually is an original source, which gets absolutely no attribution or credit in any of the pieces currently making the rounds. While I was eventually able to verify the validity of the core of the information provided, my efforts to do so raised many worrisome concerns about the original versions of the article which are being shared, concerns about ethics, legality, accuracy, and intent. So. Sigh.
Before I leave this, I want to point readers to the CRAAP test, which highlights five key elements to consider in evaluating information quality: Currency, Relevance, Authority, Accuracy, and Purpose. For this effort, I didn’t really consider currency, since all versions of the information are within the past few months. Ditto relevance. Where this became concerning was when looking at authority, accuracy, and purpose. StudyFinds took a press release about a research study that just begun, with the release focusing on that they now have the funding to do the study, and StudyFinds rewrote it to sound as if the study is almost done and the test will be available soon (ie. inserting inaccuracies and misleading information). They did so as clickbait to generate advertising revenue for themselves, while obscuring any link to the original information source. I call this a FAIL. The original information from the NHS and U. Cambridge was good, although not as exciting as StudyFinds makes it sound, but what came out of StudyFinds is nothing but clickbait.
This is to boost awareness of Apple’s release a couple days ago of their list of devices (a long list!) that might interact in not-so-great ways with pacemakers and defibrillators and other implanted medical devices.
This isn’t a new idea or a new problem (risks of cellular phones to pacemaker patients was mentioned as early as 1995!), but the technology in phones has gradually changed to become safer in many ways, and the technology in pacemakers has also been changing. Early on, the problems were more related to frequency and power, but those problems were largely sorted out by 2010. Experts spent a lot of time over several years working to convince people to not be too scared of their phones or other devices. Harvard, in 2015, reminded folk that the risk is small, and can mostly be avoided by never carrying your phone in your shirt pocket and answering your phone on the opposite ear from your pacemaker.
The gist of the messages still is to not put your phone in your shirt pocket (or any of the other devices on Apple’s long list, including iPads, chargers, and more). You might want to also think about backpacks, since you want to keep the device a solid 6 inches away from your pacemaker or defibrillator.
The main thing nagging at my brain after my previous post about COVID vaccines (“Looking at … COVID Vaccine Black Markets & the Role of Tech“) has been the idea that some of the sites for finding vaccines are phishing sites that harvest personal information for identity theft. I had thought that mentioning this in the original post, and including a link to the CDC’s Vaccine Finder website would be sufficient for me to mention. I’ve gotten some feedback to the effect that, no, people simply do not want to believe that this is an issue, and no we don’t need to talk about it. As a librarian, a big part of what we do (and what I do) day in and day out is related to assessing quality of information, and helping folk learn how to do this better themselves. This makes a great example to walk through some of that process. What I hope to do in the rest of this post is break this out in three parts: 1) more explicitly break out why you should be careful on COVID vaccine finder sites; 2) give an example of assessing the safety of a site; and 3) point to just a few examples of good sites for finding COVID vaccine information and appointments.
Are COVID Vaccine Sites Risky?
For me, I’ve seen enough online misinformation that I just tend to err on the side of assuming sites I don’t already know and trust can’t be trusted until proven safe. That’s kind of my general approach to looking for information online. For myself and my family, we get vaccines, and there is a big difference between being worried about COVID vaccines themselves and being worried about the websites where people go to find appointments for their vaccines. While I want other people to also get vaccines, I don’t want people to have anything bad happen while they are trying to get their vaccine. Here are some of the warning messages about the potential risks of COVID vaccine sites that made me think I wanted to be careful while making my appointment.
This doesn’t apply just to COVID Vaccine information and appointment sites, but are basic skills to apply to anything you look at online or offline. As Mark Twain so famously said, “Be careful about reading health books. You may die of a misprint.” There are dozens of tools to help people remember how to assess information quality. One of the most famous and popular (and memorable) ones is CRAAP (2010), from Sarah Blakeslee and friends at CSU-Chico.
You might get the idea that librarians have been working on this a long time. I certainly wasn’t the first, and learned a lot about assessing information quality from tools developed for print materials before the Internet even existed.
So let’s take a look at a vaccine finding site with these ideas and principles in mind. This is not a tutorial applying either of these tools (many of those exist), because this is going to be even shorter. This is where I start these days when I’m trying to decide if I trust a website: Who, Why, What, Where, When, How. Those probably look familiar, since many of us learned this set of questions in a school lesson on journalism or storytelling, and a good website should do a good job about telling their own story. But usually I can weed a site out or decide I’m suspicious about them with just the first three.
WHO made the site, and is it easy to figure out.
WHY did they make the site, and are they up front and honest about their goals.
WHAT does the site actually provide, is it provided legally, is it what I want, and is it provided in the way I want it.
The COVID Vaccine finding tool that I’ve been recommending the most is the one from the CDC (Centers for Disease Control and Prevention): VaccineFinder.org. A screenshot of the top of their main page is at the head of this blogpost.
If you scroll down from the main page for Vaccine Finder they do a wonderful job of answering my most important questions. Who are they? They are epidemiologists and software developers from Boston Children’s Hospital working in collaboration with and funded by the CDC. They also partner with “clinics, pharmacies, and health departments to provide accurate and up-to-date information about vaccination services.” Then they have a “Contact Us” button so you can ask more questions, as well as listing other partners such as Harvard and Castlight Health on a logo banner. Given that this is funded and sponsored by our government, and developed and designed by a collaboration of reputable organizations, I would trust this site, as long as it actually does what it says it does, which it does.
What Vaccine Finder shows me when I search for vaccine appointments in my area is a list of all the places that are providing vaccines to the public and whether or not they currently have vaccine in stock. Note that bit about available to the public, because I actually received my vaccine through the clinics for my insurance, and they are not listed because they aren’t open to the public, only to people with that insurance. The site did list 50 different locations from several different pharmacy and grocery chains as well as small businesses with only a single location. The large map for the state appeared on the main page, but after I searched for a specific zipcode it switched to a more detailed map. Note that Vaccine Finder doesn’t require that you be at the location you want, so you could search for vaccines in a different state, perhaps where a friend or loved one lives. It allowed me to customize based on which vaccines I was interested in. It also allowed me to specify how far I want to drive. To make the appointment, I would have to click through to the location’s web site or phone to make an appointment. The Vaccine Finder site does not make the appointment for you. Vaccine Finder does not have an app for mobile devices, but instead designed a site that is mobile friendly and can be used on any kind of smartphone or tablet.
Let’s compare that with another site that is really popular among my friends and relatives, Find-a-Shot.
Find-a-Shot automatically figures out where you are, and pushes you to the webpage on their site that matches your location. For some people, that makes things easier, for others it makes them worry about privacy issues. It allows you to search for location by zipcode or state as well as it identifying your location. Find-Shot mentioned on their page that some vaccine providers have blocked them from retrieving information about vaccine availability, and that they are negotiating with those companies to try to restore access to the information. They list six pharmacy and grocery chains they are working with for information (CVS, Kroger, Meijer, Rite Aid, Walgreens, Walmart), but no matter what I did in the site I was only able to retrieve vaccine location information from Rite-Aid, unless I clicked directly on the green dots on the map. The map is identical to the one from the Vaccine Finder website, but did not appear to allow the more precise map for a specific location, at least not easily. It didn’t say whether or not they have vaccine available, but whether they have appointments available, and again pushes you to the provider website for scheduling. Find-a-Shot does come right out and say they don’t keep any information on people who use the site, which is a comfort.
“Findashot.org collects no personal information about users of this site. We use Google Analytics to understand aggregate traffic patterns. Your location is only used with your permission to search for locations close to you and to show the distance to listed locations.”
So, there are some significant functional and interface differences between the two sites, but can I answer my two main questions for Find-a-Shot, what and why? Sort of. Find-a-Shot is a crowdsourced site run by volunteers, which means that officially the information comes from people all over, rather than a specific team or organization or individual. That said, it does ask you to buy a coffee for the person behind the coding for the site, who is not named but evidently was in Texas at the time. They have a banner of logos, but instead of the logos showing their organizational partners, it shows news sources that have mentioned them in an article. If you read the articles, some of them mention the person behind the site. They do list Find-a-Shot’s partners in text: GetMyVaccine.org and VaccineSpotter.org. GetMyVaccine is another crowdsourced list of vaccine appointment locations from major pharmacy and grocery chains in different states. It does not provide any information about the people behind it, but if you dig deep enough you can find a tutorial video from Erick Katzenstein. I haven’t watched the video, but it looks like he is probably the person behind the website. Vaccine Spotter doesn’t appear to be crowdsourced, instead listing the companies from which it scrapes the information. Vaccine Spotter does something else nice — they’ve put the code for the site in GitHub and made the project open source. And while they don’t say who they are on the site, they do list a personal Twitter address for Nick Muerdter, which means its a little easier to find a person. So, for all three sites associated with Find-a-Shot, they give the impression of being well intentioned folk, but it is a lot more work to make that decision. I would still say this is a site that is okay to use, it’s just a lot harder to answer those little questions like who is doing this and why are they doing it.
I didn’t go looking for a vaccine finder site that is overtly bad. You know why? Because I’m on a work computer, and I don’t want to risk going to a site that isn’t trustworthy. Some of them do the phishing by asking you to fill in a form or answer questions, but some of them could possibly gather information from your computer without you having to know it’s happening. After all, that’s how Amazon and Facebook know so much about you, and they are (mostly) trying to use their powers for at least hypothetical good (and likely to be at least mostly responsible because they want to keep the government out of their business).
Tips and Resources
You already know my favorite place to start — Vaccine Finder. But there is no one-size fits all website for this.
It’s a lot of work to find a vaccine appointment slot. It’s getting better, but oh, it’s been so awful, and some of the websites are so painful to use. The first time I tried to make a vaccine appointment, I wanted to cry, and I gave up, and waited weeks to a month before trying again. Of course you want to find an easier way to do it, and that’s why all these sites are popping up trying to solve these problems. And that is also what makes this such a wonderful opportunity for the unethical folk. Most of the sites that are doing this are genuinely trying to help people, but not all of them are from nice folk. How did I decide where it was safe for me to make my appointment? This is where we get back to CRAAP and CHAIN-of-TRUST. This is why I ask WHO as the first question when I am looking at a site that is giving or taking my information or money.
Clinic or health system
Public health department
If a website is from the federal government, I hope they are going to do the right thing. Again, this can be (and often is) debated, but for today, let’s just assume that it is in the best interest of the government to make it as easy as possible for people to get vaccinated so we can get the pandemic more under control. Even if you don’t trust the government perfectly, it’s fair to assume that there is nothing they are likely to find out from you scheduling a vaccine appointment that they don’t already know about you. (In case you haven’t guessed, I’ve been talking with people who are REALLY concerned about some of these issues.)
Next, if you are lucky enough to have insurance or belong to a health system, these are likely to have their own system set up for getting a vaccine, and it is going to be more private than most of those pop-up home grown web sites to help people find their vaccine. It might not be as easy to use, though. State and country health departments are another place to check, and the CDC has a list of them all for the USA, if you aren’t sure how to find yours.
Knowing the sites to trust isn’t enough, though, if they are too hard to figure out. There are a number of places with people volunteering to help other folk walk through the vaccine process. Local churches and non-profits are not bad places to start, or community organizations, especially if you already have a relationship with them. There are people using the appearance of being a volunteer to do other kinds of scams, so you really want to start with someone you already know and trust, if at all possible. Try asking at the local public library reference desk, if that’s an option. There are some vaccine volunteer organizations that are being recommended by trustworthy organization, if you need help and can’t find it any other way. Here are a couple links for more information, just in case.
Last week Twitter was blowing up over a new UK evidence review (using systematic review methods) on the topic of puberty blocking or delaying treatments for children and youth who identify as transgender. The largest pushback I witnessed was being directed not at the authors of the evidence review (link will force a PDF download), but the authors of the BBC news report that described the findings.
Now, the BBC news report did a fairly good job of reporting a synopsis of what the NICE review found. Minus one critical piece of context, which I would like to fill in here for people. I am speaking here as someone who previously has had a not insignificant side-gig as a consultant on systematic review methodologies. At the time, there weren’t so many of us medical librarians who were doing this, and now there are a LOT. And most of them will tell you what I’m about to say.
THE FIRST REVIEW ON A NEW QUESTION USUALLY FINDS INSUFFICIENT EVIDENCE. THIS IS NORMAL. I repeat, this is NORMAL!!
This is how it is supposed to work. Someone asks a question, and frankly, someone has to be the first. It starts somewhere. That first review finds insufficient evidence specifically because it is a new question or topic. Often researchers exploring emerging topics haven’t yet agreed on how to study it, how to define the methods and limitations, what are the standards, how to report data, how to define the study population, and so forth and so on. The first review is the first step toward doing this. The first review looks for emerging patterns and trends, picks out those that look most important and most likely to lead to consensus later, and then makes recommendations for future research in this area to use. This is the first really major step toward agreeing on those definitions, standards, measures, methods, etc.
Now comes the hard part. You have to wait FIVE WHOLE YEARS. During that time, people who care passionately will do new research, BETTER research, research that is reported better and meets the new emerging standards and guidelines. After five years, or ten years, now you can redo the study. If the new research on the topic is well done, it will either point to a new finding, or will confirm the original finding. Either way, you will know more. Sometimes it takes 10 years to achieve enough of an evidence base to show that something works. If there is not enough research funding for the topic, it may take longer.
My point is that this is not the end of the question, this is the BEGINNING. It will take a lot of money to fund more research to really answer this question. If people don’t understand how systematic review methods typically work, then politics can kill off the funding, and we will never really know the answer. With a topic as politicized and sensitive as this one, there are chances that policymakers may misread or misinterpret the significance of the findings in this report. That makes it really important to make this very clear.
The only thing this study tells us is that we don’t know the answer YET, according the the criteria specified in this report. If you want to actually know the answer, it is critical to not make a definitive decision, and to keep studying this for a while longer, and in a humane way. It might also be good to look at other reports on this from other authors, and which define the question differently. Consider the role of bias in each. I find it interesting that the similar US report had opposite findings, and am asking myself about the role of cultural context in defining how the questions were approached.
I’ve been watching stories in recent months about COVID vaccines for obvious reasons. When I first saw discussion around the idea that vaccines would become available through the black market, my initial reaction was to roll my eyes, think, “Duh!”, and close the tab. As various aspects of technology came into play, this became more interesting: the tech involved in managing the vaccines, in diverting them, in making black market vaccines or ‘alternatives’ discoverable, and in protecting or preserving official chains of access.
First, there are significant tech constraints on vaccine provision that make it challenging to divert actual vaccines into alternative non-authorized channels. The freezers required to transport or store the vaccines are a huge barrier for most, as is the need for rapid delivery of the vaccine once unpacked. The logistics are nightmarish and require tight controls. Personally, I find it hard to believe an unauthorized supply chain could do this successfully on a dependable basis. Chances are that vaccines through these channels would be either fake, fraudulent, adulterated, damaged, or otherwise unlikely to work, so why take the risk?
The earliest concerns expressed were about fake or fraudulent vaccines (and PPE, of course), especially since the FDA sees this happening with many major health topics, and it has been big with earlier COVID ‘treatments’ and prevention strategies. Operation Quack Hack started in May 2020, and by June had identified “more than 700 fraudulent and unproven medical products related to COVID-19.” I’m not sure I want to know how many they’ve found now, almost a year later! The FDA collaborated with domain registrars to persuade online retailers to remove questionable products, as well as to take down related websites. More recently (February 3, 2021) the FDA released resources encouraging the public to be wary of fake vaccines in addition to the fraudulent tests and treatments.
Possibly a more serious risk comes from diversion of actual COVID vaccines, which takes a lot of different forms. The simplest is people who fudge their replies, stretch the truth, or outright lie on their vaccine eligibility survey in order to skip place in line. According to the Advisory, these happen mostly through inflating personal health risks, people or social systems claiming certain individuals are groups qualify as essential workers, using advantages not available to all, or outright cheating. The more worrisome version is when healthcare providers are involved. More on that in a few paragraphs.
It would be one thing if these were the only thing we had to worry about. In mid-November 2020, Transparency International released Vaccinating Against Corruption, opening a public conversation around logistical and ethical challenges with vaccine distribution, as well as a range of policy, oversight, and tech options for addressing these.
“National allocation frameworks must be developed transparently and collaboratively to ensure that distribution is equitable, and access to vaccines doesn’t become a weapon to discriminate against vulnerable groups. We are also looking at how we can work with governments and those distributing vaccines to ensure that supply chains have corruption safeguards in place, and to ensure that systems are in place to actively monitor the implementation of the framework and vaccine rollout. These could range from the technologically complex, using RFID tracking on vaccines, through to awareness campaigns on reporting attempted corruption, and community-led distribution monitoring.”
Cushing, Jonathan. Vaccinating Against Corruption. Transparency International. November 13, 2020.
At the same time, China was already in the throes of coping with black market distribution of COVID vaccines, with scalpers charging hundreds of dollars for a single injection (which may or may not be effective), and people diverting actual vaccines by claiming professional need to travel. In weeks following this announcement there were increasing media reports and interviews around how the rich, privileged, and powerful are not only able to manipulate the system to their benefit, but that the system is constructed to make it easy for them to do so.
“The U.S. health care system is generally designed to give preferential treatment to those with wealth and connections, ethicists said. “When we talk about the concept of individuals being able to get to the front of the line, that’s not difficult, because our system is designed to advantage those people with means like that,” said Tuskegee’s Ellis. “They don’t have to really do anything sinister. All they have to do is access the system that they are a part of.””
It isn’t as simple as it sounds, though. When we talk about high profile individuals receiving early and preferential access to medical treatment like the COVID vaccine, that could be a good thing or a bad thing. Are they cheating the system? Are they demanding access other folk don’t get? Are they setting a good example and modeling behavior we want adopted by the general public? Are they in a position where many others depend on their health and well-being for their own survival or success? For example, I would want to insist that the President of the country be vaccinated as soon as possible, but if it was a wealthy but not-particularly-famous person in good health and of moderate age who just happened to pay for concierge care, well, that’s more ethically questionable. It’s not a clearcut good or bad, but depends on the context.
As vaccine availability and access shifted closed to the general public, the issues became more prominent. Concerns were expressed about vaccine diversion by those in the production and distribution pipeline, from factory to clinic. More news became available about challenges, scams, and scalpers in China, and those issues moved from China outward to the rest of the globe. The underground or black market around this expanded, and those nefarious elements targeting the COVID vaccine access pipeline touched on every aspect, from individual providers to the ultra-cold storage trucks and shipping, with hackers involved in diverting shipping, tracking shipments, or threatening those responsible for managing the shipping processes. Some thrilling reporting was starting to come out. I’d like to highlight just a few pieces for your attention.
StatNews had an article detailing mechanisms that were or could be used for abuse of vaccine access, with key concerns focusing on the point of delivery as most vulnerable. They interviewed a variety of experts who described ways to combat this, ranging from sophisticated technologies like artificial intelligence and radio tracking to social controls like public shaming.
“But bioethicists believe pharmacies, urgent care clinics, and doctors’ offices are among the most vulnerable points along the distribution chain. The state-line divides within the health care system make it especially vulnerable to abuse. “There’s far less scrutiny of state legislative and regulatory bodies than at the federal level,” said Potter. “The fragmentation makes gaming the system easier and more likely.””
Coming from China’s Global Times was a vivid report of the range and variety of less-than-legal approaches utilized in selling and acquiring vaccines. The most shocking to me was the idea of giving both vaccine shots at the same time, because, [sarcasm]sure, that’ll work just fine, won’t it?[/sarcasm] They also described scalpers claiming to work for the vaccine production companies; heavy use of social media to target naive victims; falsifying identity or employment to fast track people onto schedules for legitimate vaccines; using attempts to acquire illegal vaccines for identity theft information harvesting; the dark web; counterfeit vaccines that look exactly like the real thing, counterfeit vaccines shipped to other countries, and hospitals in those countries sometimes being duped into purchasing and delivering fake vaccines. As soon as hospitals found out this was possible, security around acquiring vaccines ramped up even higher, and in the USA vaccines are being delivered through government channels in part to avoid getting bad vaccines mixed with good ones.
“”I can secure you a dose of Sinopharm with a very competitive price of 3,000 yuan ($458) for two doses, getting injected in a first-class public hospital in Beijing. Many like you have approached me asking for quick accessibility, and no one reported any serious adverse reaction so far,” Xiao said when peddling COVID-19 vaccines via WeChat to a Global Times reporter who pretended to be a student going abroad and desperate for vaccine.”
NPR went into more detail about the dark web in their interview with Chad Anderson, from cyber-security firm DomainTools. In addition to issues and problems already described, Anderson described illegal marketplaces, cryptocurrencies, escrow for your illegal drug/vaccine purchases, hackers targeting hospital patient data as well as cold storage shipping required for the vaccines.
“”ANDERSON: Dark Market (ph) is the largest one, and it’s the first market run entirely by women.
VANEK SMITH: I have very mixed feelings about that. I’m like, part of – my brain is like, that’s great, go women. And part of me is, like, very conflicted, very conflicted about that.
ANDERSON: Yeah. Well, they don’t allow fentanyl. They don’t allow explosives or human trafficking.”
“VANEK SMITH: Back in October, one hospital in New Jersey paid cybercriminals more than $650,000 after the criminals locked up their computer systems and threatened to publish all of their patient records.
GARCIA: But it’s not just hospitals that criminals are targeting. Remember – the Pfizer vaccine needs to be kept really cold, and not many companies specialize in that kind of ultracold transport, and most of them probably don’t have super advanced security systems. So now cybercriminals are seeing a major opportunity targeting those cold storage companies.”
I was really impressed with the Los Angeles County Department of Public Health, who have produced a brilliant set of resources for the general public about how to identify these COVID-related scams, including a vaccine-specific resource. They warn people how to tell if a contact tracer is legitimate, that government-authorized COVID activities are never tied to Social Security payments, how to protect yourself against health insurance fraud tied to COVID tests or vaccines, identity theft, fake charities, fake helpers offering to deliver groceries or medicines, stimulus check scams, miracle cures, dangerous products like some hand sanitizers, and so much more.
“A RED FLAG is a warning sign or signal that something might be a scam. Look out for these COVID-19 vaccine red flags: Someone offers to move you into an earlier group to get the vaccine for a fee. Someone tries to sell you a place on a COVID vaccine waiting list. There is no “vaccine waiting list”. Someone on the street, online, on social media, or knocking on your door tries to sell you a shot of vaccine.”
Things started moving closer to home (as in the USA). Following on the heels of COVID vaccine fraud in China came stories of Chinese nationals in other countries covertly receiving vaccines approved for use in China, but not in the country where they reside. “Vaccine diplomacy” has become a buzzword that is overwhelming the news media — just try searching it in Google to get a sense of the global scope of the competition among nations to become a leader in controlling access to COVID vaccines.
“The message in late December wasn’t meant for Jesse, a newcomer working at an offshore gambling operator in the Philippines. But her eyes fell on a group chat on her colleague’s unattended phone, detailing plans to administer coronavirus vaccines this month to her Chinese co-workers. Her colleague had sent their peers a reminder “to make sure when they get vaccinated, they have to wear long sleeves . . . to cover the cotton after the injection,” said Jesse, a Filipino who chose to go by her nickname for fear of reprisal. “And you’re not supposed to say anything to other employees.” No coronavirus vaccine has been approved for general use in the Philippines, nor is one expected to arrive, officially, until at least February.”
“According to the police report, 31-year-old Joshua Colon stole three doses’ worth of the Moderna vaccine, then forged the vaccine screening and consent forms. Colon reportedly told detectives he was directed to do so by his supervisor, a captain with the fire department who Grady said will likely be arrested upon his return home from vacation.” “Colon told detectives that on the day of the incident, his supervisor joked with him about getting some vaccines vaccines for his mother. He said he was told by his supervisor to report the vaccines as being no good. Colon told detectives he refused to provide those vaccines to his supervisor, at which time his supervisor threatened he would tell a higher up in the chain of command that Colon was selling the vaccines outside of work.”
It should not surprise anyone that various experts and organizations started offering events and webinars with guidelines on how to prevent the COVID-19 vaccine black markets that had already emerged elsewhere.
“”In a manufacturing plant you could have armed guards,” who prevent theft, Knight pointed out. But as a medication moves through the “chain of custody,” he said, “the closer you get to the patient, the less oversight there is and the easier it is to steal the vaccine or the medication.”” “Invistics uses machine learning and analytics to flag suspicious signs of strange medication behavior. But, as other experts pointed out, the danger of vaccine stealing may go beyond physical security: There’s a potential cyber element as well. “If sensitive formulas or research are stolen on how to produce the vaccine, other rival nation-states or even rogue laboratories could potentially produce illegal vaccines and sell them on the black market,” noted Trevor Daughney, vice president of product marketing at Exabeam, which develops security analytics technology. “In addition, if distribution plans are found and downloaded, cybercriminals might become criminals in the physical world by tracking down and stealing shipments to sell,” Daughney added.”
Bots used to manage vaccine appointment slots was complicated. There were so many problems getting vaccine appointments, that some of the bots were actually tools designed to help legitimate patients access appointments for which they were eligible. The flip side of this was, however, that not everyone has equitable access to the tools and technology and information to make it possible to access these tools. Then there were less nuanced cases in which bots hijacked vaccine appointments and redirected them to scalpers or patients outside the target audience.
““THANK YOU! THANK YOU! THANK YOU! I GOT MY DAD AN APPOINTMENT! THANK YOU SO MUCH!” tweeted Benjamin Shover, of Stratford, New Jersey, after securing a March 3 appointment for his 70-year-old father with the help of an alert from Twitter account @nj—vaccine. The success came a month after signing up for New Jersey’s state online vaccine registry. “He’s not really tech-savvy,” Shover said of his father in an interview. “He’s also physically disabled, and has arthritis, so it’s tough for him to find an appointment online.”” “But the person who created a bot that’s now blocked in Union County, 24-year-old computer programmer Noah Marcus, said the current system isn’t fair, either. “The system was already favoring the tech-savvy and the person who can just sit in front of their computer all day, hitting refresh,” Marcus said.” “Walgreens said it is using cybersecurity techniques to detect and prevent bots so that “only authorized and eligible patients will have access to schedule a vaccine appointment.” CVS Health said it’s encountered various types of automated activities and has designed its appointment-making system to validate legitimate users.”
“To do so, security measures such as bot detection and prevention will play key roles in delivering this critical service to patients.”
CVS said its program could thwart bot attacks. “Our vaccination appointment site has a layered defense that includes capabilities to detect automated cyberattacks, such as botnets. Those capabilities, together with our application design and user input validation, enable us to validate legitimate users,” a CVS Health spokesman said.”
“The complexity of securing vaccine appointments from the government, even without explicit evidence of bots tampering the process, inspired a few programmers to create website monitoring programs like Georgia Vax, Visualping and NYC Vaccine List, which alert people to available appointments at a local level for free.”
I’ve been attending a ton of virtual conferences and events, and have done so for many years. Something to keep in mind for virtual is people attending from many many timezones. Another thing to keep in mind is that people are attending from home, and may have distractions or demands different from when they attend in-person. Yet another is that audience is likely to include people who would not or could not attend in person, people from resource-poor communities, people with disabilities, people who just don’t travel for whatever reason. This means that your audience will very likely require different kinds of accommodations than for a face-to-face event.
The days will need to be short, and on a weird schedule. 10am on the east coast is 7AM on the west coast, 3pm in London and Paris, 1AM in Sydney AU. If we do a full day, we are looking at probably 10amET-7pm, with a one hour lunch break. Whatever form breaks take, they will have to appear at some point, and that time has to be planned into the schedule.
Some folk believing that the audience will be fine with back to back sessions and no breaks. What we’ve been learning locally is … no. No, the audience is absolutely NOT okay with meetings that have no planned breaks. There are a lot of reasons for this, but here are just a few.
People who really love your content don’t want to leave, and get cranky when you force them to stay past the point of comfort.
People who don’t really love your content interpret the lack of breaks as a sign that you don’t care if they stay or not, or engage with your content. So they take breaks. Lots of them.
People who really, REALLY love your content? This gives them a chance to mentally process the content and retain it. Good teachers know the power for learning of a well-timed break.
People with disabilities see this as … ableist. Sorry, but it’s true. The assumption that it’s easy for people to pop away quickly, take care of bodily needs, and pop back, all without missing anything important? If you think that’s a thing, you are clearly someone who is temporarily able-bodied and not thinking about those in other circumstances.
Breaks offer a change for physical activity, improving health for everyone. Especially at health and medical events, it behooves us to set a good example with this.
Breaks ease stress on body and mind, improve health, improve engagement, improve learning, increase engagement, increase a sense of respect and gratitude for the event planners, and increase the perception that the event planners have a sense of gratitude and respect toward the attendees.
I really feel very strongly about this, and that building in brief breaks is not only a kindness to those who need them, but communicates and supports a healthy approach. Here at UM, we are being told to schedule in breaks every 60-90 minutes, and HR encourages everyone to take a 3 minute physical activity break every 60 minutes. They say it actually reduces the University’s health insurance bills! Many professional meeting planners and event coordinators are also endorsing that concept.
For virtual meetings, there is a lot of creativity that can feed into your breaks. One idea to consider around the idea of building in breaks, is to make them working breaks. Have drop in Q&A sessions on special topics for those who wish. Maybe that’s when you highlight tools or resources. Have your long panel discussion, and then follow it with a break with a drop-in Ask-Me-Anything (AMA) on a related topic, or an extended more private Q&A by the panelists. You can set up entertainment during breaks — local musicians, show a YouTube video that leads into the next session, or have brief breakout rooms focused on topics of interest. Another idea I read about was doing kind of improv quick discussions during short breaks, pose a problem or question, and let people brainstorm approaches or solutions. Build in breaks, a bit of flex time, and still make that productive useful time for your content. Have the organizers take turns hosting the break time conversations, and that way they also get breaks the rest of the time, while colleagues share the load of keeping the audience engaged during breaks.
A lot of the conferences I’ve been attending have opted for full days, but many people came late and left early to accommodate the needs of their location and their life there. A few have opted for shorter day events to avoid that challenge, and those events actually seemed to have consistent attendance throughout the day! It seemed that 10a-3p ET worked for the North American audience, and that would actually work fairly well for European folk as well.
Just remember — if you are planning an online event or virtual meeting, those breaks are also critical to the event and organizational staff. These days, you really should have ASL interpreters and captioning. Those people are not machines, and they need breaks, too. You need to hire extra interpreters and captioners so they can switch off. Building in solid breaks that don’t require them can save money for the event, meaning you hire a team of two to switch off instead of three or four. It also leaves space for smooth handoffs between support teams, which can minimize needing to break up the presentation flow.
The main takeaway? Building in breaks helps EVERYONE (organizers, funders, attendees), and makes for better learning during the event, better engagement with the content/activities of the event, better health and less stress for all involved, … Good breaks mean you planned a better event,
Conferences that Work: Schedule Breaks During Online Meetings “When you don’t schedule enough breaks, people will leave an online meeting seemingly at random. Sometimes they’ll do this because they need to, but the other meeting attendees don’t know this. As a result, the meeting will feel unnecessarily disjointed, and it’s easy for participants to conclude that the meeting is not so important, or boring, or a waste of time.”
International Institute for Facilitation and Change: Why your meetings need breaks “Breaks are strategies to increase participation and satisfaction in meetings. … The truth is: If breaks are not scheduled, people get up and leave the room anyway to attend to their physical and emotional needs. Many meeting participants are genuinely busy people who need time to attend to other aspects of their lives. If breaks are not scheduled, they will distract others by making telephone calls, answering email, consulting with colleagues, etc. during the meeting.”
Meeting Professionals International: Entertainment and Wellness Break Ideas for Virtual Events “To combat waning attention spans and keep people engaged, it’s important to provide your virtual attendees with time to clear their minds, get energized and reset their focus. That’s where entertainment and wellness breaks between sessions can play a key role in enhancing the overall virtual experience. Fun, lively and interactive activities help people stay focused and pumped up for your next round of programming. They also help participants stay motivated to return to your virtual event rather than check out on their phones. In other words, you must give your participants a compelling reason to tune back in or risk losing them altogether.”
Advice for Engaging Virtual Conference Attendees “How long will someone sit at a computer? No one really knows how attendees will behave during a virtual conference. But we know that attendees need variety and they need breaks.” “Breaks. Use breakout rooms for snack and lunch breaks where attendees can talk about aha moments. Or, open some up as drop–in lounges for discussions on specific topics, for example, dealing with the economic impact of this crisis.”
These are just a few favorite images from some works I’ve discovered in the University of Michigan Libraries. I turned them into coloring pages because I’m such a fan of the #ColorOurCollections project and because I think we have such wonderful collections here at UM and I like folk to know about them. Absolutely delighted that this year the UM Kelsey Museum took on the challenge!
There have always apps that share data with other apps or the operating system. Sometimes we want them to share data more than they do, sometimes we want them to not share data unless we know. A new effort from Facebook, Google, Twitter, and Windows aims to try to make it easier to share data when you want to, but to only share the data you decide to share. The Data Transfer Project describes the project as “a collaboration of organizations committed to building a common framework with open-source code that can connect any two online service providers, enabling a seamless, direct, user initiated portability of data between the two platforms.”
I know my first reaction was, “But what about security?” They’re ready for the question. Their White Paper has a substantial section on security and privacy that opens with:
“The security and privacy of user data is a foundational principle of the Data Transfer Project. Because there are multiple parties involved in the data transfer (the user, Hosting Entity, providers, and Contributors) no one person or entity can fully ensure the security and privacy of the entire system. Instead, responsibility is shared among all the participants.”
The section continues with discussions of data minimization, rate limiting, user notification, token revocation, minimal scopes for auth tokens, data retention, and abuse, with a table charting out how tasks and responsibilities are mapped out between the user, provider/exporter, provider/importer, hosting entity, and DTP system.
From 2011 to early 2018, Storify had dominated the niche of tools to harvest, collect, and organize social media and related content into meaningful collections, a.k.a. stories. There were other tools, like Lanyrd which collected conference and event content in a similar but more robust fashion with a freemium model, however Lanyrd appears to have vanished around the same time that Storify announced it would be closing. The market was wide open for a replacement, and Wakelet came to the forefront. Wakelet is what we’ve started using, and here we’ll give a quick overview of why, some of the differences, as well as pros and cons [See the sidebar].
Wakelet began in 2016 as a tool for the multiple-URL concept, making it easy to collect a few links on the same concept into a single short URL. MultiURL and OpenMultipleURL were similar tools at that time, but Wakelet didn’t stop there, and has expanded dramatically, adding Twitter import tools, alerts, shares, notifications, and ways to customize and personalize the visual display of collections. With the opportunity provided by the closing of Storify, Wakelet appears to have made an intentional effort to build and integrate new functionalities similar to those provided by the now defunct Storify, but having also added many desired functions that Storify lacked. They add new features and functions so rapidly that we anticipate some of the lacks we describe in this short article will have appeared by the time it’s published. That’s happened multiple times already while we’ve been researching this article!
Wakelet has a number of features that Storify never offered. Foremost among these is the export feature that Storify only made available as they were sunsetting. Wakelet didn’t have that until recently, but it was requested so often, they added it to their to-do list, and within six months it was available as a baked in option. Wakelet allows embedding of elements that Storify did include (such as Facebook, Instagram, Flickr, Soundcloud, Tumblr, and YouTube) as well as services that weren’t easily included (Google Maps, Spotify, Amazon, Meetup, Behance, Medium, & Dribble). Wakelet also includes some features that Storify had at one point, but which broke towards the end of their lifecycle, like embedded PDFs or interactive Slideshare content. For Wakelet, many of these services do not have easy import tools, but need to be added through a copy and paste of the URL for the desired item. Other attractive new features from Wakelet include save-as-you-go collection building without requiring that you publish, a variety of privacy levels, and private collections for personal-only use.
There are some features Storify had which we miss in Wakelet. One of these is the descriptive URLs based on the title of the collection. In Storify the collections were referred to as stories, and in Wakelet they are called wakes, but we may use any of the three terms in this article. The descriptive URLs were a big plus for search and discovery, as well as for improving the SEO of the collection. Another feature we miss is being able to automatically sort all of the items in a collection. In Storify, we could toss in all the tweets for a hashtag, all the Instagram pics, Flickr images, YouTube videos, and then tell it to sort them into chronological order. That was super handy. In Wakelet, you need to sort them by hand, and it is slow going because of the infinite scroll. Wakelet does provide a minimalized display to make sorting easier, but it’s still a pain. It would also be nice if Wakelet had import tools like the one for Twitter content but for other popular social media services.
Last but not least, accessibility and intellectual property stuff. Wakelet does a pretty fair job with accessibility, at the level of code elements and passing automated browser tests, but there are still things they could do with accessibility tests at the user level. The basic editing interface (especially the drag and drop features and the sliders) can be problematic for people with fine motor control as well as for users with vision challenges. Infinite scroll is popular right now, so it’s not unexpected that Wakelet would use it, but it causes problems both with certain kinds of users and in browsers or computers with limited memory. In addition, the ‘bounce’ that goes with infinite scroll can be distracting for persons with certain kinds of learning or attention disabilities.
Regarding intellectual property and legal information, Wakelet offers a fairly open license:
“Wakelet does grant you a worldwide, non-exclusive, non-sublicensable, and non-transferable license to download, store, view, display, preform, redistribute, and create derivative works of Content solely in connection with your use of Wakelet, and in accordance with, these Terms.”
It’s important to remember that Wakelet is based in the UK, and that their licensing and copyright laws are not based on United States legislation.
In closing, this is a thing that happened while we were writing this. “Wakelet has already responded to my question from six minutes ago! This is how to run a company. This is fantastic.” Yeah. Not bad. Not bad at all.
SIDEBAR: Wakelet (08/27/2018):
PRO: Runs properly on modern computers/browsers
CON: Possible problems accessing shared content on older computers
PRO: No known problems via AChecker
CON: Drag and drop, infinite scroll, and issues for users with sight and fine motor control limitations
PRO: Save and organize links to articles, videos, tweets, & more. Available for Chrome, Firefox, and Safari.
CON: Links to extensions are difficult to locate, as they are in a collection and not a page on their website.
PRO: Paid, commercial accounts may create group registered users
CON: Only available for paid accounts and very limited information on these accounts is available
PRO: Supported: Twitter, Facebook, Instagram, Soundcloud, Google Maps, Spotify, Amazon, Slideshare, Meetup, Tumblr, YouTube, Behance, Flickr, Medium, & Dribble
CON: Some content must be manually added via URL
PRO: Customizable banner and background images supported by Unsplash
PRO: App available for iOS & Android
PRO: Drag and drop individual items or move to top/bottom
CON: Cannot auto-sort after adding content
PRO: Auto-saves drafts and can save privately before publishing
CON: No advanced search: can only search by keyword
PRO: Very present, active, & responsive
PRO: Rapid! iOS: 17 updates in past year. New feature alerts via Twitter and collection.
PRO: Unique URLs for each collection and profile
CON: No descriptive URLs for collections