What is this?
We are journalists who have been writing about Covid testing since March. This is our citizen science-journalism attempt to see if there are more accurate tests out there than what is in the current system, and if more accurate tests can be used to obtain better results — for example, if faulty tests or the lack of tests has kept people from accessing treatment, or from knowing if they actually have (or had) Covid.
So we’re sending some inexpensive at-home antibody test kits to people who commit to helping us write a few stories for our blog at ClearHealthCosts.
This is a small pilot program in partnership with the Covid-19 Long-Haulers Discussion Group on Facebook on the validity of such tests and the uses of them in the world.
Who are you?
We’re ClearHealthCosts, a journalism company doing health cost transparency. When the pandemic struck, we pivoted to covering all Covid all the time. Read about us here. Read our Covid coverage here. Here’s our founder’s TED talk on the topic of health costs.
How does it work?
You fill out the Google form. Here’s the link. We’ll take the responses and randomize them and send out antibody tests kits to about 30 people. If you get one, you’ll tell us your results — and then tell us what you used the results for in the world. Did you take them to your doctor? Did you use them for a disability claim? How were they received? Then we’ll write stories for our blog about your experiences.
What should I know before agreeing to do this?
Scientists say most of the tests should not be used to govern personal behavior. They are for research purposes only. That is, a positive antibody test doesn’t mean you’re “immune” to Covid and can stop taking safety precautions. Also it’s a known fact that any antibody test can be unreliable. But we are aware that for some people, the lack of a positive test has created obstacles for them.
Our founder and CEO, Jeanne Pinder, has had 4 positive antibody tests and 2 negative ones. She is taking a number of tests herself as part of our journalism seeking to establish if there’s validity on these tests, and, if so, what does it look like. Read more about her experiences here.
Aren’t all the tests — both for active infections and antibodies — unreliable?
We do think that there are some tests that are more reliable than others. We learned that we could buy these tests in bulk and use them as a way of comparing these results with others, or making tests available to people who hadn’t been able to get them in the past.
Why would I want to take a test and give you the results?
To contribute to our journalism, and to citizen science.
Maybe you’ve been unable to get tested at all, and you’re curious.
Maybe you had a negative test but you don’t believe it was right.
Is this THE ANSWER about whether I had Covid or not?
Nope. See above on test reliability.
Will the results of this test be accepted by my health care providers?
That’s one of the things we’re trying to find out.
Why did you pick this test?
Pinder took this test as part of a study of Covid patients at Mount Sinai Medical Center in New York. This was one of her four positive antibody tests.
She asked the researchers why they picked this test, and they said: “At the time we ordered these kits there was not much known yet about the sensitivity/specificity of them since COVID was still so new. We did some internal validation at our center and also looked at the results from our COVID positive / COVID negative populations in the study. We found that the sensitivity and specificity is quite high, but again is only validated for research and not for clinical purposes.
“We also went with this company because they were able to produce the stock we needed faster (some other companies had month long delays). There were a few other options out there but less well-known companies that we were not sure of. In terms of what tipped the scale, it was the timing of availability.”
Also, when ordering this test online, we learned that it is manufactured in Wuhan, China. We figure that a Wuhan company has a lot of experience with Covid-19.
Am I going to go into a lab or something?
Nope, you do it at home. Here’s the experience of our CEO and founder, Jeanne Pinder, who took this test at home as part of the Mount Sinai study she’s a part of. It takes about 15 minutes, and the directions are very clear — you’ll get your result right then and there, at your home.
Here are her other experiences in getting tested for antibodies–she has 4 positive results and 2 negative ones
What if I don’t want to tell you my results, and tell you the follow-up?
Then please don’t ask us to send you the test!
When we establish who’s getting the tests, we will ask you to sign a form acknowledging that you’ll send us your results and tell us what happens after that.
We understand that not everybody will want to share that with us. So for purposes of this study, we are asking people to sign up ONLY if they can commit to contributing to our journalism.
I really really really need a test because (your reason here).
We are asking people to sign up on a Google form, and then we will randomly pick who gets one. We don’t want to be in the position of saying your reason is better than anyone else’s reason. Credit to Amanda Finley, admin at the Covid Long Haulers Discussion Group on Facebook, for suggesting this.
Why should I trust you with my personal health information?
We won’t reveal your test status or other information about your use of the results publicly in connection with your name unless you tell us it’s OK. We’re planning to identify people as something like “Edith, 45 years old, a stay-at-home mom in Wichita” or something like that.
OK, you convinced me. What do you want me to do again?
Fill out the form by Dec. 20 and we’ll randomize the requests and pick that way. We’ll let you know next steps by email.
I’m not interested, but I know someone who is. How do I tell them about this?
Pass on the link to this FAQ and the Google form.
I want more information. Who do I ask?
Email Jeanne Pinder of ClearHealthCosts at email@example.com or Amanda Finley of the Covid Long-Haulers Discussion Group on Facebook at firstname.lastname@example.org.