The next level of open health data tracking is good for you | Opensource.com

The next level of open health data tracking is good for you

Posted 04 Dec 2013 by 

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Companies like Google, Facebook, and Amazon are collecting enormous amounts of information all day, every day. They use powerful supercomputers to analyze this data. Many people use this to better market products to consumers, for instance.

But, how can big data do more? We see companies and inventors coming out with ideas for improving healthcare, for one, by tracking human biometrics. I think we can take it to the next level and make more wide-scale improvements to our health and our lives.

After a long struggle with addiction, I've realized a dream of mine is to use the health data and analysis of the masses to help solve problems of the mind and body that afflict millions of people worldwide. Good For You is that initiative.

I believe that many of the world's population understands that if we're "on the grid", a lot of our information is already out there. My call is for people to not only share their personal shopping preferences, but their health preferences too. Globally and locally, we can come together to help solve bigger, more important problems than that of capitalism and consumerism.

I believe millions would opt-in to a project like this. Would you? I get excited at the prospect of making life better for both myself and future generations by simply making a record of the things I'm eating and doing everyday. The personal benefit is huge. The group benefit is even bigger.

For a program like this to operate successfully, the entire process would need to be open: collaboration and transparency. By keeping every element of the system open, we could perform these same analytical methods on every aspect of the process itself, promoting rapid evolution and agility. A strong, volunteer-driven effort could do tremendous things and overtime, grow this program into a strong community of contributors.

Components needed to succeed:

  • open source software
  • open standards for data collection, documentation, and scientific methods
  • open access and research, where all results, experiments, and peer reviewed journals are shared

The program

On the user end, anyone could log into the simple app and journal what they’re doing and how they feel. The information is stored in a personal database that remains in the users’ control.

On the researcher end, scientists could query personal databases without allowing the server access to any personal identification information. Their information would then be used to test any given hypotheses. The test would be performed, and the results would be made publicly available.

Reducing duplication of experiment preparation and execution, the Good For You program would save time and money the world over.

For example

A researcher could design an experiment that queries all men between the ages of 25 and 35, comparing those that smoke against a control group that does not smoke, looking for scale of mood in each group.

Unlike social networking platforms, each query would be completely anonymous, which would likely lead to more willing test subjects. Also, the program could display helpful information to users based on their individual habits when compared to the average user/participant.

With a solid foundation of users, the program could accept and log biometric data, such as heart rate and galvanic skin response, which becomes all the more relevant as wearable computers become the norm.

Get involved

Read more about my thoughts for the implications of an initiative like Good For You. Help us get started on these projects by sending a message via the form at the bottom of this page:

  • Android app development
  • iOS app development
  • Server side programming for data collection and analysis
  • Community recommendations from researchers, scientists, doctors, nurses, personal trainers, dieticians, etc.
  • Beta testing and bug reporting
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8 Comments

A visitor

This is crazy. I refuse to provide *ANY* personal/private/medical/biometrical data. As I see it, the next logical step would be to exclude applicants from specific job opportunities because analysis of their data shows a 0.0001 % chance of being medically unsuitable to the task. Total control, total surveillance ? Not with me ! I'd rather go offline for the rest of my life.

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Concerned

I posted a comment yesterday giving a good example why sharing personal health data is a very bad idea and now the comment has disappeared!

I'm VERY surprised and concerned that this happens on a web site dedicated to openness (and supported by Red Hat)!!

This was the article I had linked to:
Canadian denied entry to the US after agent cites private medical records

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jhibbets
Open Sourcerer

I don't know the exact details of what may have happened with your comment, but sorry it disappeared. It may have been flagged/caught for being spam.
Jason

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Unidentified

The best I can say for this proposal is that it's totally dumb and proposed by a techie who (as so often) is totally clueless about human nature and the workings of society in general.

Health data that become available like that will be abused. By insurance companies, by employers, by banks, by all levels of government, by anyone who wants to sell medical products, by snake-oil salesmen, and generally by every darned company wishing to improve their negotiation position with a customer.

And for what? What for pete's sake is the purpose supposedly served by this warehouse of highly sensitive data?

The author evidently has no clear idea and zero research expertise because he doesn't offer any such purpose but instead propagates a starry-eyed belief in the magic catchphrase "big data". As in: if you haven't a clue about what it is ... but see that it's hyped ... you want some of it.

Not with my data, and not with your data either if you've got any sense.

Last but not least add the utterly nonsensical confounding of means (Open Source, Open Process) with the product (Open Data about everyone's private medical details) and goals (none specified).

Bury this dumb idea deep and without delay.

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Unidentified

The best I can say for this proposal is that it's totally dumb and proposed by a techie who (as so often) is totally clueless about human nature and the workings of society in general.

Health data that become available like that will be abused. By insurance companies, by employers, by banks, by all levels of government, by anyone who wants to sell medical products, by snake-oil salesmen, and generally by every darned company wishing to improve their negotiation position with a customer.

And for what? What for pete's sake is the purpose supposedly served by this warehouse of highly sensitive data?

The author evidently has no clear idea and zero research expertise because he doesn't offer any such purpose but instead propagates a starry-eyed belief in the magic catchphrase "big data". As in: if you haven't a clue about what it is ... but see that it's hyped ... you want some of it.

Not with my data, and not with your data either if you've got any sense.

Last but not least add the utterly nonsensical confounding of means (Open Source, Open Process) with the product (Open Data about everyone's private medical details) and goals (none specified).

Bury this dumb idea deep and without delay.

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Greg P

As a physician, I wouldn't go so far as to say this is totally dumb or crazy, but it is naive.
If we consider the unknowns of online interactions, it's hard to imagine how you can assess the safety of submitting your personal information to anyone you don't actually know in person.
What promises can you get over the internet that you can really rely on that your information will not be used in some inappropriate way?

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Unidentified


As a physician, I wouldn't go so far as to say this is totally dumb or crazy, but it is naive.

Well ... as a physician you specialise in treating individuals with a possible minor in public health. I wouldn't necessarily ascribe to you a high level of knowledge about potential abuse of people's medical information being open-sourced. That's not part of your training or your daily work, right?

But on the other hand ... you ought to be in a position to tell us ... what potential benefits you see (if any) that cannot be had without open-sourcing everyone's individual medical data. Could you enlighten us in that respect please?


If we consider the unknowns of online interactions, it's hard to imagine how you can assess the safety of submitting your personal information to anyone you don't actually know in person.

It's easy however to assess the lack of safety of submitting tour personal data to anyone you don't actually know in person. Just ask yourself how people (and companies and organisations) could possibly further their own interests if they knew a lot of people's medical data.

Refusing people a job because there is an increased risk they'll get ill or will have a lower productivity than average is a blindingly obvious result. Refusing people insurance or loans (or at the very least significantly increasing the premium or the rate) is right behind. Selecting people with a known medical condition for a targeted sales effort (like on-line adverts, plain old mailbox stuffing) is a no-brainer as well.

As soon as any origanisation or natural person is able to further their self-interest by using an information advantage, they will do so. The only exception is when that's illegal (fat chance of that being the case if you *release* the data yourself) and they run a high risk of being found out.

What promises can you get over the internet that you can really rely on that your information will not be used in some inappropriate way?

None whatsoever. What you do get however is the guarantee that hundreds of thousands of entities will, on a daily basis, ask themselves how they might possibly benefit from exploiting people's private information.

Want to bet that's all innocuous? If so, lets conduct an experiment.

Please post your entire medical dossier, your complete financial record, and your political and religious convictions on your facebook page. Might not be Open Source, but it sure is "Open to the World"

Then carefully note (over the course of a year) if you experience any negative consequences and let us know.

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Njord
Open Enthusiast

Delightful! A proposal to open source regulatory intrusion into out personal physical beings. No thanks. There is already far too much ability for abuse and misuse of my personal information without suggesting that I add my physical health to it as well. Your theoretical researcher might just as well be searching for a group of "substandard" genetic variations to mark for discrimination. This is a chilling proposal, and makes me think a lot harder about the viability of open source 3D printed firearms- we will soon need to rush aux barricades if open source totalitarianism comes in vogue.

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I’m a thirty one year old father and husband (born in 1981). My wife, Megan, and I have been married for three years (2009), and our daughter is 2 and a half (2010). I’ve been making graphics, websites, and software for over ten years, all the while touring as a professional singer/songwriter. In the studio, I usually work alone, but I have a band that plays with me live.

I've done lots of volunteer work for non-profit agencies in Saskatchewan, and have served as a councillor for the