Amy Dockser Marcus writes with the sensitivity and precision of a scientist, which is why I was thrilled that she recently turned her attention to the patient-led research being conducted by people with LongCovid, which affects an estimated 10-20% of COVID-19 patients.
The Wall Street Journal‘s pay wall may prevent you from reading the full story but do try:
Covid-19 Patients Are Doing Their Own Research: To advance scientific knowledge of the disease, lay people are organizing to generate data about their experiences
Naturally I think this article is yet more proof that patient-led, peer-to-peer health innovation is becoming obvious to everyone.
Let’s start an open thread to discuss the issues raised.
For example:
“The pandemic has created an opening for citizen scientists, because even now clinicians don’t fully understand the virus. Early clinical trial data comes mainly from studies involving hospitalized patients, whose experiences may not apply to those who are suffering but don’t end up in the emergency room.”
– Amy Marcus, Wall Street Journal, Jan. 30, 2021
Or, as Craig Lipset tweeted:
“Patients are at it again!
No longer willing to wait for established research processes to get around to answering the questions most important to them.
Community/Social + Data Sharing = Research Democratized
Go figure?”
– Craig Lipset, Feb. 1, 2021
Marcus talked with a clinician who isn’t so sure:
“I had concerns about the study,” said Adam Gaffney, a pulmonary specialist and instructor at Harvard Medical School. Dr. Gaffney said the decision to include data from people without positive Covid or Covid antibody test results called into question the researchers’ conclusions. “I think the standards and the methods should not be different depending on who is doing the research,” he said.
What happens when the standards are wrong or outdated? What other examples can we cite to show evidence of the need to be more open and flexible, particularly in an emergent and/or deeply mysterious situation?
As I’ve written before, I think patient-led research is a key element of pandemic response. How might we disseminate the tools and lessons learned from this and other citizen-science projects?
Please let me know what you think in the comments below.
Featured image: “Flightplan” by Dan Brickley on Flickr.
One glaring miss in all this talk about citizen science mimics the real world situation. It’s once again mostly about Caucasians talking to Caucasians about their problems. Unless I have missed something no one has yet engaged in doing specific citizen science regarding Covid and long Covid in minority populations since they are so badly impacted by the disease. That’s how we perpetuate health disparities.
Thank you, Gilles. We need to do better across the board on this, most urgently when it comes to COVID-19.
Another citizen-scientist story from Amy Dockser Marcus vintage 2012.
Unfortunately people with ALS are still searching.
https://www.wsj.com/articles/SB10001424052702304818404577345953943484054
Thanks so much for making the jump from Twitter to share the link!
We would love to have our data collection platform used for Long Covid research – by and for people. We will waive (the very small) fee for them to set up their studies, connect EHR (to capture data from 700,000 EHR portals – longitudinal data will be critical), and integrate genomics data (we have some very good discounts on WES and WGS). Our IRB stands ready to approve such studies. We’d like to contribute to this very important cause, and per Giles comment above, we have some Black and brown communities who would participate if some of the citizen scientists leading these projects would help them too.
And Amy did a story on our work in 2011 – https://www.wsj.com/articles/SB10001424052970204621904577014330551132036
Thank you! Another great read.
Been almost a year. Wanted to add my experience with “the covid fog”. For 10 months I experienced fog (along with many other issues). An extreme amount of stress fell on me to the point where I was overwhelmed, overloaded and probably experienced some sort of break briefly. When I came back in about a day or so I realized the fog left. In the couple months since, there has been no recurrence. I still have other residual issues including other mental impingements but no more covid fog. I wonder if my brain did some some of reboot that removed the fog? And if so if it can be recreated under less extreme circumstances? Time has improved certain things yet not others but this is the only instance of anything I could point to that actually had an effect on my issues.
Mark, thank you for sharing your experience.
As Diana Cejas, MD, MPH, wrote on Twitter yesterday: