Questions About QS and The Future of Citizen Science, Crowd-sourced, and Crowd-funded Science

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 :stuck_out_tongue_winking_eye: 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?

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Some of the meetup groups have in the past done series of meetups focused on topics like sleep tracking, but it can be difficult to find enough people locally to focus on specific problems. (now defunct) and we are curious (check the “trackathons” section) are two attempts to get people to collaborate on self-experiments.

For crowdfunded research, see experiment.

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Emily: You’ve managed to quickly catalog many of the good ideas people have had about how to support knowledge making, plus add some new twists and useful examples. I would be very happy if some of these more developed community experiment projects took off, and I know our small group here at QS Labs would do our best to support them. A few thoughts that might be good to consider:

  1. The more complex processes, experimental platforms, have a common failure point: The simple and direct business models (so far) don’t support the development and maintenance expenses. So the bigger ones, like 23andme, end up selling a data-driven product to Pharma to support the community. This makes the whole thing into a pretty high level biz-dev driven project, which of course is valuable to the community and lucrative to all concerned but also very high risk. We’re almost certain not to play in that particular kind of startup game but some of our best friends do. :slight_smile: If you want to go that route, we’ll help as we can.

  2. Closer to our work supporting the forum and the meetups are self-organized projects, both individual and group. Inside Tracker, for instance, sponsored one of our conferences and offered free tests for people with interesting projects. Right now I myself am organizing a project to investigate home testing of blood cholesterol. If you have something you want to do, this is a great place to find like minded people, and it doesn’t have to be very complicated.

  3. I can tell from reading your other posts that you have knowledge about HR/HRV that would be super useful to others. You yourself could start some kind of project in this area and we could help. If you want to talk about what we could do, just email me, I’m glad to talk about it. One of the good things about QS is it is very flexible and improvisational, so if something makes sense we can do it.

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Ahh, thanks. yeah those are something like what I’m imagining. Still want kickstarter-like prizes from the scientists though for donating! Okay, working on transportation in Managua, Nicaragua? I want like a colored map of the city for my bedroom wall. Just a little something to connect me to the project.

Thanks Gary, I’m one of those people who has more ideas than projects I could possibly ever work on. My current area of passion is actually lab testing, and not so much HRV, so things like home testing of blood cholesterol greatly interest me. As a patient myself, access to cheaper labs, quicker labs, labs that stand in for more expensive labs, interpreting labs, optimal reference ranges, direct access testing, etc. fascinate me.

I’m interested in things that serve people like myself–the overeducated, underfunded person, whether they are chronically ill or a biohacker that doesn’t happen to be a tech millionaire.

If you could say I have a goal or dream with my present line of thinking it would be to steal everything functional medicine has to offer from the doctors and offer it at a lower price point. The functional diagnostic nutritionists did this half way. I want to do it all the way and bring all the information and testing and interventions directly to the people… for a fee, just a lesser fee.

I like what Chris Kelly has done with nourishbalancethrive, for example. He doesn’t do huge markups on tests and supplements, you don’t have to be a client to order testing from the site, there is a payment plan for the yearly program. Hook that up with a health financing credit card like Care Credit or whatever the Prosper of healthcare financing would be, or Liberty Direct when they get their shit together and things are looking good. It’s very fair, but an $8500/year package is still too much for most people.

And I can become a functional diagnostic nutritionist myself for only $5000 and that includes a bit of complimentary labwork and someone working on my case while I’m learning.

And I don’t need any extensive education or coaching. All I need is organized information. This is what this test means, this is what to do about it.

Basically, I just want to help people capture the years of clinical experience of a practitioner and figure out what natural protocol to use on themselves via books, webinars, forums, without actually having to go to a practitioner,They can have the option to seek more help if they want, but in general I don’t think most people are as incapable at treating themselves as the patronizing medical establishment would have them believe. So I want to lower that barrier to healthcare that is the $200-800/hr out of pocket consult fee first off.

Second and more difficult is to lower the costs of the testing. So many sites like direct labs have huge markups just for being the intermediary, giving you the name of doctor to put on a form. And some practitioners do it too, and they don’t even ship the kits from their office. They usually just tell the lab company to ship it to you. I don’t really know what to do about that other than start a new testing depot specifically dedicated to affordable testing.

I appreciate the curating of a set of labs and the pretty graphics, but for me something like WellnessFX is not particularly useful. I can get everything cheaper in AZ direct from SonoraQuest and find the optimal ranges and make up my own spreadsheets and graphs to track myself for free.

I’m encouraged by developments in testing though. I like needles myself :slight_smile: , but blood spot testing and urine spot testing are nice for saving people draw fees and trips to the lab.

So if anyone has any information on the latest developments in lab testing, laws, and affordable progressive health care do send it my way.


Intriguing! I’d been idly considering doing a GoFundMe or something to see if people would fund n=1 labwork for tiny experiments.

I think you and I have similar interests on that. If it’s of any use to you or others here, I can send my lab provider data that I’m plugging into my woefully-incomplete lab comparison site. I’ve made JSON files with test/pricing data from 8 providers, plus what I believe may be LabCorp and Quest’s raw prices they charge to “resellers.” Could be useful for anyone considering some sort of group-buy or creating a discount lab provider.

I’ve been thinking along similar lines, wanting something like Earthclinic except for blood markers. Letting people share studies for each marker, alternate testing methods, “solutions” to bloodwork problems, voting the solutions up/down, etc. I’ve wondered about liability problems though, I’m still not sure how Earthclinic hasn’t had issues when people’s typical answer is something like “put vinegar in your eyes.”

I’d be curious as well. I subscribe to a few things:

  • Lab Soft News
  • AACC Newsletter (don’t think I’ve ever received it though)
  • The Dark Report (the RSS version doesn’t show the subscriber prompts like the web site does, not sure whether that’s an oversight or working as intended)
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Emily and Dan: If you would like an invite to join our “higher than normal frequency” blood cholesterol tracking project, contact me via email:

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Interesting stuff! Thanks Emily, for triggering this thread, and all, for contributing further.
On a related note- any thoughts on platforms/initiatives such as Lybba, OpenHumans, DataForGood? Any active users here?

And Gary - any extra invites? :slight_smile:

On the topic of invites: Yes, I will follow up in email.

re: Open Humans, I’m a former employee but still an active user. :slight_smile:

Unlike Data For Good the data at Open Humans is available to everyone (assuming the uploader makes it public); for that reason I’m more inclined to focus my efforts on sharing my data at OH.