So this may be a naive question that you guys talk about all the time, but I’ve often thought if there were a place where I could join with other people to do the same tracking experiment, at the same time that would be fun. I mean self-tracking is fun but it could be EVEN MORE FUN I don’t know if people ever do this on the forum because I just joined last week. The first problem is that it doesn’t seem like there are enough people active on here to have the exact same interest at the same time. Maybe in the meetupgroups this happens?
Now I know there are a lot of universities and other organizations getting into collecting data from apps, like with my D-minder App you can join a vitamin D study. And I know there are app developers collecting data from their own users like EliteHRV has stats on the HRV of users (skewed toward performance athletes). But is there/could there/ should there/will there eventually, be something like this forum, where people go to not just share their little n=1 experiments but to collaborate? Like where I can go see a list of active groups and join the group that is tracking caffeine intake alongside sleep? Or exercise alongside mood. Similar to goal apps where you can join a group of people who want to cut out caffeine for 30 days or get 8 hours of sleep every night, but a whole website and with the experimental/tracking aspect.
There would be so many different ways this could play out. Like you could have it really loose and generic, nothing more than posting a forum topic about something, “who wants to track magnesium supplementation and muscle pain with me?” or have the experiment of the month or tracking focus of the month: “Join us in February For Sleep Month!”, or encourage everyone to report experiences with a particular app or wearable of the month to see what it is good for: March is XEOLightElite Experience month (I made that up). In that case you could get into collaborating with developers who are giving discounts and free trials of stuff, which seems like it happens here, but not to the level where I can easily interact with the developers and everyone else trying it or they have a readymade mailing list of willing test subjects.
Or you could have it more organized. One person or a few people could volunteer essentially as moderators to run a more formal experiment, they would lay out the hypothesis and the parameters, perhaps exactly what tracking apps to use, it could even have a beginning and an end date after which everyone would submit their data voluntarily for group analysis (or it would be submitted automatically all along). I’m assuming one of the moderators or some other volunteer or employee would be capable with statistics and all the data manipulation would be transparent and/or the data would be open source so anyone could find and present a novel correlation, or display it in a more beautifully designed way, or make sure the math was right.
People could have profiles and those who had successfully completed experiments could earn points or badges for their biohacking warriorship. They could sign up to be alerted to new experiments in their category of interest. Perhaps moderators would be able private invite specific people to their special group.
This could be a thing where biohacker enthusiast types pay a modest amount to access the site for a month or a year, or pay to join a specific study. Call it QSClubhouse or whatever. In return they get curated information, advice, motivation, camaraderie, directed to vetted apps or products we know work the best, and a sense of focus. Sure, normally people get paid to be in research studies, but we’re (my imaginary team and I) targeting this to highly motivated self-obsessed self-actualization types, health nuts, and productivity nuts. They want to pay to be part of the latest and greatest trends in self-quantification.
I think I would pay to join such a thing, especially if it was around health. There are tons of people on phoenix rising and cure zone and other big chronic illness forums who could be interested, and then you have the bulletproof forum and the jack kruse forum that are very active (and his website is hella monetized with different membership levels and seminars, all too expensive for me). Even people scouring Amazon reviews for supplements and health and fitness products to try are the type who could be interested in this. Especially if their membership includes access to well-researched consumer reports on technologies and results of using them. Maybe there are e-courses on statistical analysis for lay people who want to analyze data but don’t know how. Maybe a simple but flexible design program for making cool, modern-looking charts and graphs like Canva is to facebook banners and instagram ads.
Say I was a moderator of a study on HRV biofeedback, which I know a lot about. Say I have an advanced degree and training but that isn’t relevant. The consumer gets to look at my profile and decide if they want to join my group. Maybe I have rolling admissions. Each person collects for only 6 weeks but for 3 months new people can join in, or maybe I just start on a specific date and get my participants in advance. Say my study is going to look at HRVB for anxiety. I hypothesize that HRVB will reduce anxiety in 6 weeks. And as part of my study you to have a heartmath device and you have to download Mood Panda to track your mood. And maybe I have a discount coupon for you to use if you don’t own the device. And you in turn try to use heartmath for 30 days 10 minutes twice a day. Just like any other study compliance is an issue, but I have some data on compliance at least because heartmath records sessions.
And meanwhile participants can post online about how they’re doing, what they think is happening, ask questions about technique, find out more about HRV and why HRVB supposedly works. I have some simple questionnaires my participants fill out online at the beginning and end so I can gather demographics and all the appropriate releases and legal bullshit. In the end I do a nice write up in the form of a blog article on the main page about what I found, maybe a youtube video.
Maybe I’m doing all the research and organization and interpretation legwork because I’m curious and enthusiastic. Maybe I’m a student at a university. Maybe I’m getting money from the memberships and it is my full-time job. Maybe I’m personally invested in gathering data on the thing I invented. Maybe someone is paying me to gather data on the thing they invented. Sure it is a bit sloppy, compared to “real” science: no controls, and the whole being part of something aspect has huge placebo potential but that is okay, because it is still evidence and still useful and fun and interesting. And I can even make an active control group if I am that ambitious. Compare HRVB for anxiety with a hypnosis meditation.
So is something like this unrealistic even if more and more people get interested in self-quantification and biohacking? It seems like halfway done already, with researchers and developers coming on here asking for advice, offering beta testing, and people reporting on their results of their experiments at show and tell. It seems to me to be just another level of organization that might require a business-bent because of the work involved.
Then I often think about taking it further. It is my own chronic health issues that cause me to think about all these things. We all know there is a problem with science and research and funding for things that don’t involve the pharmaceutical industry or some other big corporate interest. People are dying and suffering because there are not enough studies on all these safer, cheaper alternative medicine and lifestyle things that probably work.
And I believe they work, but even so i’d like to see more on specific products and techniques and how they compare to eachother and all sorts of stuff. It’s so hard to figure out from anecdotal evidence. I think there are enough very sick people that they would pay to fund research directly into a subject or disease they were interested in. Chronic mystery illnesses like Lyme, fibromyalgia, even Autism, just don’t get any attention from govt funded researchers.
So I often think of something like a kickstarter or Kiva for science. Researchers spend so much time getting grants and having their work and interests directed by what they can get funding for. Isn’t there some way to just crowdfund them directly? I can’t see that being more of a conflict of interest or a legal problem than the way things are now. In this hypothetical model the people who are paying are not the participants in the study. The study is run just as usual by real scientists, with all the usual procedures and controls, but the populace gets to “vote” monetarily on what they think is important to study. We have all these outlets now for artists, Patreon, etsy. I’d like to see a way to support scientists. Sci-Fi. But instead of science fiction, it stands for science financing, get it!?.
I don’t know what you get as a reward if the scientists aren’t operating with a ubiome or 23 and me type design. And if you don’t get your money back eventually like a microlending operation. Perhaps it would work well for herbs and supplements, where contributors get a free bottle of something already generally recognized as safe. Brands matter, we might as well study brands. There are some supplements like Atrantil and Prescript Assist that have gone the premium pricing, independent research- backed route and it seems to be working for them because then doctors trust their stuff. If they did more studies, contracted out to universities or however that works, but funded using this Sci-Fi platform they could essentially sell/advertise their existing product to donators while further compiling the evidence supporting their existing product.
Or the platform could include the thing where the buyers are the research participants. Jack Kruse’s Quantlet bracelet is sorta like that except his buyer/beta testers are also funding the manufacture of the product, I think, more like kickstarter, less emphasis on serious research and data collection. But hey, if people are paying for something as opposed to being paid to test something, they are at least likely to be more objective about what it does, even if business and science are getting very mixed up. You won’t have that amazon review thing where people are sort of bribed and guilted into being nice because they got something for free. I got kicked off my tester list I think. I was too honest.
Does anyone have similar thoughts and ideas about these types of things? How would you make it work? What do you think is the future for citizen science? crowd-sourcing and crowdfunding data?