7 ms·

The whole mining data on health has so many wonderful possibilities, but giving so much of my privacy it's a big no for me.

akozak 12y ago
Interesting. Is that an absolute position, or would you be more willing if the benefits (longevity, better health) were more apparent?
- duaneb 12y ago
  I highly doubt any data about my health could give me enough benefit to warrant such an intimate invasion of my privacy.
  - _croz 12y ago
    Would you consider it an invasion of your privacy if the data was anonymized?
    - gus_massa 12y ago
      It’s very difficult to anonymize data, and prevent that someone deanonymize it. The bigger cases that I remember are the AOL searchs and Netfix data. More info: http://www.cnet.com/news/aol-netflix-and-the-end-of-open-access-to-research-data/ http://www.cnet.com/news/aol-netflix-and-the-end-of-open-acc...
    - duaneb 12y ago
      Anonymized data is a myth.
      - seanflyon 12y ago
        Anonymization is hard, not mythical
- totoroisalive 12y ago
  Absolute position. The benefits are not that appealing to me.
- a3n 12y ago
  There are only two changes that would make it very easy for me to accept revealing my medical data, for science, research or just about anything else. 1. No insurance companies involved as health care gatekeepers. At the moment, they are very much an adversary to me. 2. Strong, enforced laws against employers discriminating for health. I'm sure the letter of the law currently sounds strong, but I'm assuming you have to sue to right any wrongs. Advantage employer. Neither one of these will happen in my life time, because insurance companies make huge profits on throttling our healthcare, employers will always like flexibility to do what they want with the law, and both camps fund Congress.
yawaramin 12y ago
The data would be anonymised. No one would be connecting your records to _you._
- totoroisalive 12y ago
  According to who?
- commandar 12y ago
  The anonymization rules for PHI are strict enough that it would make a lot of the interesting mining you could do difficult if not impossible. Specifically the restrictions related to dates and locations.
- deleted 12y ago
  [deleted]
- shaggyfrog 12y ago
  When "anonymization" is done poorly, it has consequences. It was bad enough with Netflix recommendations getting de-anonymized; imagine what could happen with actual health records leaked. http://arstechnica.com/tech-policy/2009/09/your-secrets-live-online-in-databases-of-ruin/ http://arstechnica.com/tech-policy/2009/09/your-secrets-live...
- Goladus 12y ago
  It's a lot trickier than this. Suppose you have a rare genetic condition that affects 0.005% of the population. It takes very little additional information to single out a person when the first thing you do is rule out 99.995% of the possibilities.
Scoundreller 12y ago
Although your health records may have some legal protections, health care is only one determinant of health. Other determinants of health, like your gender, food choices, lifestyle, income, driving history, family history, physical environment, education, social network, etc. have all been heavily mined. Much legally protected stuff can largely be inferred anyway. There aren't too many people without peanut allergies that haven't bought anything containing peanuts for the past 5 years.
lostcolony 12y ago
As a kind of note and response to all of your other responses, the issue isn't actually anonymization, but being able to correlate it with other data. That is, if health data were anonymized, and was done right, and was made unable to be correlated with any other data, it likely would be sufficient. It's when you start allowing it to be correlated with personally identifiable things that it ceases to be anonymous. That is, sure, let's take a case where you have a super rare genetic disorder. That, combined with the time in 2005 where you broke your leg, is sufficient to distinguish you from every other person in the country. In short, you have a unique health profile. So what? Unless there is further information, that can't be traced to you. As an example, it's when we start saying "Ah, and the person is receiving treatment at (facility)" that we now know where you live. It's when we start correlating it with usernames that we start getting an internet trail. It's when we start correlating those with forum profiles that we get a real name, and now we know who you are. The only other way someone could match that profile with you, is to have access to the profile, and to know you personally. Otherwise it links nowhere. I agree the risk is huge; people don't do it right. But anonymous health profiles are -not- in and of themselves dangerous; it's when details linking them to further information leaks out that it's a problem. But, pragmatically, while yes it would be incredibly hard...has anyone here read the rights they're signing away when they go to the doctor? Does everyone here trust every system a doctor uses, every system a health insurer uses, and every system used by marketers and researchers that the feds -do- allow to have access to this data? The real risk of Google would be that they could correlate it with so many other things about you; but the health insurers still have your medical history combined with all your PII.
- laurenstill 12y ago
  You both may be interested in this paper: Publishing data from electronic health records while preserving privacy: A survey of algorithms http://webcache.googleusercontent.com/search?q=cache:1gHT-y0g9rwJ:www.j-biomed-inform.com/article/S1532-0464%2814%2900140-3/pdf+&cd=2&hl=en&ct=clnk&gl=us http://webcache.googleusercontent.com/search?q=cache:1gHT-y0...
- watwut 12y ago
  Another interesting write up about anonymization https://freedom-to-tinker.com/blog/randomwalker/no-silver-bullet-de-identification-still-doesnt-work/ https://freedom-to-tinker.com/blog/randomwalker/no-silver-bu... tl;dr: it does not work much.
Dakuan 12y ago
We had a big old flap about this in the UK recently http://www.theguardian.com/society/2014/jun/17/nhs-patient-data-audit-significant-lapses-confidentiality-hscic http://www.theguardian.com/society/2014/jun/17/nhs-patient-d...

akozak 12y ago

Interesting. Is that an absolute position, or would you be more willing if the benefits (longevity, better health) were more apparent?

duaneb 12y ago
I highly doubt any data about my health could give me enough benefit to warrant such an intimate invasion of my privacy.
- _croz 12y ago
  Would you consider it an invasion of your privacy if the data was anonymized?
  - gus_massa 12y ago
    It’s very difficult to anonymize data, and prevent that someone deanonymize it. The bigger cases that I remember are the AOL searchs and Netfix data. More info: http://www.cnet.com/news/aol-netflix-and-the-end-of-open-access-to-research-data/ http://www.cnet.com/news/aol-netflix-and-the-end-of-open-acc...
  - duaneb 12y ago
    Anonymized data is a myth.
    - seanflyon 12y ago
      Anonymization is hard, not mythical
totoroisalive 12y ago
Absolute position. The benefits are not that appealing to me.
a3n 12y ago
There are only two changes that would make it very easy for me to accept revealing my medical data, for science, research or just about anything else. 1. No insurance companies involved as health care gatekeepers. At the moment, they are very much an adversary to me. 2. Strong, enforced laws against employers discriminating for health. I'm sure the letter of the law currently sounds strong, but I'm assuming you have to sue to right any wrongs. Advantage employer. Neither one of these will happen in my life time, because insurance companies make huge profits on throttling our healthcare, employers will always like flexibility to do what they want with the law, and both camps fund Congress.

yawaramin 12y ago

The data would be anonymised. No one would be connecting your records to _you._

totoroisalive 12y ago
According to who?
commandar 12y ago
The anonymization rules for PHI are strict enough that it would make a lot of the interesting mining you could do difficult if not impossible. Specifically the restrictions related to dates and locations.
deleted 12y ago
[deleted]
shaggyfrog 12y ago
When "anonymization" is done poorly, it has consequences. It was bad enough with Netflix recommendations getting de-anonymized; imagine what could happen with actual health records leaked. http://arstechnica.com/tech-policy/2009/09/your-secrets-live-online-in-databases-of-ruin/ http://arstechnica.com/tech-policy/2009/09/your-secrets-live...
Goladus 12y ago
It's a lot trickier than this. Suppose you have a rare genetic condition that affects 0.005% of the population. It takes very little additional information to single out a person when the first thing you do is rule out 99.995% of the possibilities.

Scoundreller 12y ago

Although your health records may have some legal protections, health care is only one determinant of health. Other determinants of health, like your gender, food choices, lifestyle, income, driving history, family history, physical environment, education, social network, etc. have all been heavily mined. Much legally protected stuff can largely be inferred anyway. There aren't too many people without peanut allergies that haven't bought anything containing peanuts for the past 5 years.

lostcolony 12y ago

As a kind of note and response to all of your other responses, the issue isn't actually anonymization, but being able to correlate it with other data. That is, if health data were anonymized, and was done right, and was made unable to be correlated with any other data, it likely would be sufficient. It's when you start allowing it to be correlated with personally identifiable things that it ceases to be anonymous. That is, sure, let's take a case where you have a super rare genetic disorder. That, combined with the time in 2005 where you broke your leg, is sufficient to distinguish you from every other person in the country. In short, you have a unique health profile. So what? Unless there is further information, that can't be traced to you. As an example, it's when we start saying "Ah, and the person is receiving treatment at (facility)" that we now know where you live. It's when we start correlating it with usernames that we start getting an internet trail. It's when we start correlating those with forum profiles that we get a real name, and now we know who you are. The only other way someone could match that profile with you, is to have access to the profile, and to know you personally. Otherwise it links nowhere. I agree the risk is huge; people don't do it right. But anonymous health profiles are -not- in and of themselves dangerous; it's when details linking them to further information leaks out that it's a problem. But, pragmatically, while yes it would be incredibly hard...has anyone here read the rights they're signing away when they go to the doctor? Does everyone here trust every system a doctor uses, every system a health insurer uses, and every system used by marketers and researchers that the feds -do- allow to have access to this data? The real risk of Google would be that they could correlate it with so many other things about you; but the health insurers still have your medical history combined with all your PII.

laurenstill 12y ago
You both may be interested in this paper: Publishing data from electronic health records while preserving privacy: A survey of algorithms http://webcache.googleusercontent.com/search?q=cache:1gHT-y0g9rwJ:www.j-biomed-inform.com/article/S1532-0464%2814%2900140-3/pdf+&cd=2&hl=en&ct=clnk&gl=us http://webcache.googleusercontent.com/search?q=cache:1gHT-y0...
watwut 12y ago
Another interesting write up about anonymization https://freedom-to-tinker.com/blog/randomwalker/no-silver-bullet-de-identification-still-doesnt-work/ https://freedom-to-tinker.com/blog/randomwalker/no-silver-bu... tl;dr: it does not work much.

Dakuan 12y ago

We had a big old flap about this in the UK recently http://www.theguardian.com/society/2014/jun/17/nhs-patient-data-audit-significant-lapses-confidentiality-hscic http://www.theguardian.com/society/2014/jun/17/nhs-patient-d...