Two days ago I told my friends on friendfeed that I had a rare kidney disease and that I could no longer eat red meat or drink Diet Coke or Pepsi, among other dietary changes. Don’t worry, my dad has the same disease and he’s still doing fine, and the doctors have run a crapload of tests and found that I’m otherwise healthy.
But look what happened. 200+ comments.
That prompted me to write another friendfeed item saying that health privacy is dead. I gave a ton of reasons and lots of other people jumped in and either agreed or argued with me.
So, how about you? Why don’t you join in on these two threads, or leave a comment here, about why or why not you will share your medical condition with the public.
Scobleizer 
Robert, I see no reason not to be transparent in every aspect of my life. I’ve found that the HIPPA laws that are supposedly protecting my privacy actually make it very inconvenient for me to manage my own health services. I’ve been quite vocal about my depression challenges in hopes that it will educate others. My parents have various medical conditions, some worse than others, and I often contribute to organizations supporting research targeted at those diseases. If someone really wanted to do the digging, I’m sure the information is easy to find. Why should we care? It seems Americans have a false expectation of a right to privacy. Show me where privacy is guaranteed and how that guarantee is enforced.
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Robert, I see no reason not to be transparent in every aspect of my life. I’ve found that the HIPPA laws that are supposedly protecting my privacy actually make it very inconvenient for me to manage my own health services. I’ve been quite vocal about my depression challenges in hopes that it will educate others. My parents have various medical conditions, some worse than others, and I often contribute to organizations supporting research targeted at those diseases. If someone really wanted to do the digging, I’m sure the information is easy to find. Why should we care? It seems Americans have a false expectation of a right to privacy. Show me where privacy is guaranteed and how that guarantee is enforced.
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Why on God’s green earth do we even need to tell THE WORLD about something as private as that? You need to draw some boundaries. Obviously, that is just my opinion ….. not meant to offend. I know how touchy everyone is these days with the truth.
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Why on God’s green earth do we even need to tell THE WORLD about something as private as that? You need to draw some boundaries. Obviously, that is just my opinion ….. not meant to offend. I know how touchy everyone is these days with the truth.
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Frank: you are absolutely wrong and you need to read my links above to see why it is very beneficial to talk about your medical condition. My wife did just that on Facebook and learned that her doctor was treating her disease improperly and with the wrong drugs. I learned a TON about my condition and have joined up already with other people who have same/similar conditions. This stuff could save your life (my wife was getting antibiotics which were unneeded and inappropriate for Shingles).
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Frank: you are absolutely wrong and you need to read my links above to see why it is very beneficial to talk about your medical condition. My wife did just that on Facebook and learned that her doctor was treating her disease improperly and with the wrong drugs. I learned a TON about my condition and have joined up already with other people who have same/similar conditions. This stuff could save your life (my wife was getting antibiotics which were unneeded and inappropriate for Shingles).
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Robert – You can tone down the aggressive “You’re absolutely wrong!” which implies that you are always right. As I said this was an opinion so I’ll do what I need to do and you can do what you feel is right. Thankfully it’s a free internet and we are all entitled to our positions and opinions that may actually be right despite what internet royalty proclaims.
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Robert – You can tone down the aggressive “You’re absolutely wrong!” which implies that you are always right. As I said this was an opinion so I’ll do what I need to do and you can do what you feel is right. Thankfully it’s a free internet and we are all entitled to our positions and opinions that may actually be right despite what internet royalty proclaims.
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Frank: you were wrong because you made it an attack on people who share personal details online. Go back and read what you wrote again. If you said “I would never do this” then I wouldn’t have gotten so aggressive. The thing you were wrong about is trying to make it globally wrong for anyone to share personal medical details. You are on the wrong side on that, by the way. Personal experience, etc etc.
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Frank: you were wrong because you made it an attack on people who share personal details online. Go back and read what you wrote again. If you said “I would never do this” then I wouldn’t have gotten so aggressive. The thing you were wrong about is trying to make it globally wrong for anyone to share personal medical details. You are on the wrong side on that, by the way. Personal experience, etc etc.
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And you are really funny Frank. You said “the truth” first. Like you have an exclusive hold on that. People like you make me ill. You can’t take what you dish out.
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And you are really funny Frank. You said “the truth” first. Like you have an exclusive hold on that. People like you make me ill. You can’t take what you dish out.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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OK you win. You are better than me. Sorry.
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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I did mis type about the truth. That was my opinion of the truth. As for the personal attacks of making you ill etc I hope you feel better 😉
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Robert, you’re conflating privacy with secrecy, and a lack of privacy with openness. Privacy is really about autonomy, the ability to share information about yourself with others, the ability to choose who may access that information, and who may not. For example, you could choose to tell everyone on earth your medical condition (and I think you have). But a life insurance company would still require written authorization before your doctor shared your medical records with them (although a similar authorization is not needed if you share those records yourself).
In this Web 2.0 world, one of the biggest concerns sick people have is whether they will be able to take advantage of social networks in order to gain and share information about themselves and their disease (which is, as you say, of great benefit), without losing the control they have over that information when it comes to disclosing it to a health insurance company or an employer. Current privacy laws, including HIPAA, don’t offer much protection to people who use the internet to research or commiserate. Indeed, Web sites don’t have many (any?) privacy obligations at all. That is to say, you may well decide to share your information among only a small group of fellow-sufferers using a private Web site, but there’s no legal framework that punishes the site if they allow that information to escape, and there’s no requirement that they even disclose a breach. That fundamental lack of protection, which many people accept as a fact of life and law, still affects our autonomy, and therefore our privacy.
I agree with you that privacy is affected by our own decision to share or not to share. But that is a definitional quality of privacy, not the lack of privacy. Real privacy is making a decision to share with your doctor, or with a support group, or with a private discussion group, while ensuring your information does not escape the small perimeter you’ve defined. Difficult to impossible, you say? Maybe, but for many people who aren’t Robert Scoble, such contours and control would be quite possible within the right legal framework.
Again, I’m not saying that’s ideal (many would argue that complete transparency is the ideal). But that is privacy. And I do think Healthcare on the Web would explode if there were more protections for people who use the Web for their care.
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Robert, you’re conflating privacy with secrecy, and a lack of privacy with openness. Privacy is really about autonomy, the ability to share information about yourself with others, the ability to choose who may access that information, and who may not. For example, you could choose to tell everyone on earth your medical condition (and I think you have). But a life insurance company would still require written authorization before your doctor shared your medical records with them (although a similar authorization is not needed if you share those records yourself).
In this Web 2.0 world, one of the biggest concerns sick people have is whether they will be able to take advantage of social networks in order to gain and share information about themselves and their disease (which is, as you say, of great benefit), without losing the control they have over that information when it comes to disclosing it to a health insurance company or an employer. Current privacy laws, including HIPAA, don’t offer much protection to people who use the internet to research or commiserate. Indeed, Web sites don’t have many (any?) privacy obligations at all. That is to say, you may well decide to share your information among only a small group of fellow-sufferers using a private Web site, but there’s no legal framework that punishes the site if they allow that information to escape, and there’s no requirement that they even disclose a breach. That fundamental lack of protection, which many people accept as a fact of life and law, still affects our autonomy, and therefore our privacy.
I agree with you that privacy is affected by our own decision to share or not to share. But that is a definitional quality of privacy, not the lack of privacy. Real privacy is making a decision to share with your doctor, or with a support group, or with a private discussion group, while ensuring your information does not escape the small perimeter you’ve defined. Difficult to impossible, you say? Maybe, but for many people who aren’t Robert Scoble, such contours and control would be quite possible within the right legal framework.
Again, I’m not saying that’s ideal (many would argue that complete transparency is the ideal). But that is privacy. And I do think Healthcare on the Web would explode if there were more protections for people who use the Web for their care.
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This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
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This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
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This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
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This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
LikeLike
This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
LikeLike
This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
LikeLike
This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
LikeLike
This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
LikeLike
This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
LikeLike
This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
LikeLike
This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
LikeLike
This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
LikeLike
This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
LikeLike
This is the kind of ‘discourse’ that completely marginalizes and minimizes the internet space. Thanks for showing me that. In all honesty, I wish you only the best and I hope you and your wife do well with your conditions.
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If you choose to share your health issues with the world, that’s fine. But keep in mind that it could have a huge impact on your ability to get a job – even if your medical condition has no actual bearing on your employability. HR personnel are not immune to prejudice, ignorance or stupidity. It can also affect your ability to get credit. Friends, acquaintances, and coworkers can suddenly shy away and/or disappear. I saw it all – my parents were both cancer survivors.
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If you choose to share your health issues with the world, that’s fine. But keep in mind that it could have a huge impact on your ability to get a job – even if your medical condition has no actual bearing on your employability. HR personnel are not immune to prejudice, ignorance or stupidity. It can also affect your ability to get credit. Friends, acquaintances, and coworkers can suddenly shy away and/or disappear. I saw it all – my parents were both cancer survivors.
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Frank: stop being a jerk. You’re the one who came in here and threw your weight around and tried making everyone who shares stuff online look stupid. Then I called you on it and you started crying like a baby. Geesh.
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Frank: stop being a jerk. You’re the one who came in here and threw your weight around and tried making everyone who shares stuff online look stupid. Then I called you on it and you started crying like a baby. Geesh.
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David: that really makes me sad that that stuff happens in today’s world. mrshl: thanks for adding to the conversation here. I agree with what you’re saying and would love to see sites come up to that level of standard. Personally, I wish all the insurance and jobs and taboos would disappear and then it wouldn’t matter whether or not something leaked out. The problem is that people are jerks. If they stopped being jerks it’d benefit us all a lot more than whether or not a site has a good privacy policy.
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David: that really makes me sad that that stuff happens in today’s world. mrshl: thanks for adding to the conversation here. I agree with what you’re saying and would love to see sites come up to that level of standard. Personally, I wish all the insurance and jobs and taboos would disappear and then it wouldn’t matter whether or not something leaked out. The problem is that people are jerks. If they stopped being jerks it’d benefit us all a lot more than whether or not a site has a good privacy policy.
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Ok, scobie, what if you are married, and get a gonorrhea on your “business” trip to fiji?
What if you are married and have kids and live a moral life, then suddenly get an anal condition caused by a donkey punch you got in your last guys-night-out?
What if…
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Ok, scobie, what if you are married, and get a gonorrhea on your “business” trip to fiji?
What if you are married and have kids and live a moral life, then suddenly get an anal condition caused by a donkey punch you got in your last guys-night-out?
What if…
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I’m not so sure your boundary issues apply to the rest of the world.
David is absolutely right that HR and insurance companies try to dig up as much of that type of info as possible to assess risk. Same goes with banks. It’s 100% within their right to access risk using publicly accessible information. Your health is a reasonable risk to their business.
I wouldn’t expect that to change anytime soon. If insurance companies can’t access risk and charge appropriately, the insurance model goes out the window and everyone is simply paying À la carte. Is that better? Who knows, but employers aren’t going to like that idea since it means you have one less thing forcing you to stay at your current job. Most employees value health insurance above all other non-salary benefits.
That said… there’s likely a way to anonymously implement a web based system for sharing information and sharing credibility. How to build it so that nobody could breach it? That’s where it starts to get complicated.
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I’m not so sure your boundary issues apply to the rest of the world.
David is absolutely right that HR and insurance companies try to dig up as much of that type of info as possible to assess risk. Same goes with banks. It’s 100% within their right to access risk using publicly accessible information. Your health is a reasonable risk to their business.
I wouldn’t expect that to change anytime soon. If insurance companies can’t access risk and charge appropriately, the insurance model goes out the window and everyone is simply paying À la carte. Is that better? Who knows, but employers aren’t going to like that idea since it means you have one less thing forcing you to stay at your current job. Most employees value health insurance above all other non-salary benefits.
That said… there’s likely a way to anonymously implement a web based system for sharing information and sharing credibility. How to build it so that nobody could breach it? That’s where it starts to get complicated.
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Sometimes blog comments become blogs, themselves.. please see my comment here: http://carolinadreamz.blogspot.com/2009/01/in-response-to-robert-scoble-and-heath.html
Great topic!
~Heidi
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Sometimes blog comments become blogs, themselves.. please see my comment here: http://carolinadreamz.blogspot.com/2009/01/in-response-to-robert-scoble-and-heath.html
Great topic!
~Heidi
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I am not sure Frank is acting like a jerk. More probably he is acting like someone who has never confronted a rare medical condition. That said, he is COMPLETELY wrong in his assumptions.
Ask the 1/2 million people that have been using our system over the last 14 years. When you suffer from a serious medical condition (and even more if the condition is rare) you decide pretty fast that you gain more from sharing than you risk losing in terms of privacy. When dealing with rare diseases the wisdom of crowds is irreplaceable. And it can easily save lives. But you cannot truly benefit from it unless you write publicly about your condition. It’s as simple as that.
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I am not sure Frank is acting like a jerk. More probably he is acting like someone who has never confronted a rare medical condition. That said, he is COMPLETELY wrong in his assumptions.
Ask the 1/2 million people that have been using our system over the last 14 years. When you suffer from a serious medical condition (and even more if the condition is rare) you decide pretty fast that you gain more from sharing than you risk losing in terms of privacy. When dealing with rare diseases the wisdom of crowds is irreplaceable. And it can easily save lives. But you cannot truly benefit from it unless you write publicly about your condition. It’s as simple as that.
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mrshl: Bingo.
Robert: The “jerks” issue is more complex than you realize. Ignoring for the moment jobs and insurance, different people weigh different taboos differently, so every person has his/her own definition of what needs remain private. Therefore, every person needs the right himself/herself to decide what personal information should be disclosed, and to whom.
Hopefully this parallel will not offend anybody, but think of a homosexual “coming out.” A gay person “in the closet” misses out on the support and understanding of like-minded individuals, but also avoids the social and financial hardships of being openly gay. An “out” homosexual enjoys/suffers the opposite. Some may place a higher value on support groups; some may place a higher value on avoiding problems. The point is, it is their decision to make.
If I force somebody in/out of the closet (or force out/leak through negligence somebody’s medical details), I am not only trampling their freedom, I am saying on an intensely personal issue that my value judgment is without qualification superior to theirs. That sort of arrogance is the very seed of people “being jerks.”
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mrshl: Bingo.
Robert: The “jerks” issue is more complex than you realize. Ignoring for the moment jobs and insurance, different people weigh different taboos differently, so every person has his/her own definition of what needs remain private. Therefore, every person needs the right himself/herself to decide what personal information should be disclosed, and to whom.
Hopefully this parallel will not offend anybody, but think of a homosexual “coming out.” A gay person “in the closet” misses out on the support and understanding of like-minded individuals, but also avoids the social and financial hardships of being openly gay. An “out” homosexual enjoys/suffers the opposite. Some may place a higher value on support groups; some may place a higher value on avoiding problems. The point is, it is their decision to make.
If I force somebody in/out of the closet (or force out/leak through negligence somebody’s medical details), I am not only trampling their freedom, I am saying on an intensely personal issue that my value judgment is without qualification superior to theirs. That sort of arrogance is the very seed of people “being jerks.”
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Erm…. well… I live with a disability AND medical conditions that stem from it. I disclose that information when I feel it’s appropriate and often when someone asks. I make no secret that I live a disability but there are times when it’s in my best interests not to go into detail (i.e. with gov’t agencies or other types of organizations)There are just as many reasons why one should disclose disabilities and chronic conditions as there are not to. It’s a matter of personal choice and as long as I still have that ability, I will exercise it.
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Erm…. well… I live with a disability AND medical conditions that stem from it. I disclose that information when I feel it’s appropriate and often when someone asks. I make no secret that I live a disability but there are times when it’s in my best interests not to go into detail (i.e. with gov’t agencies or other types of organizations)There are just as many reasons why one should disclose disabilities and chronic conditions as there are not to. It’s a matter of personal choice and as long as I still have that ability, I will exercise it.
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I will also add here that I think insurance companies have no business determining whether I need a certain medication or not. If the doctor prescribed it, then I should get it. Insurance companies are not MDs and MDs are not insurance companies.
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I will also add here that I think insurance companies have no business determining whether I need a certain medication or not. If the doctor prescribed it, then I should get it. Insurance companies are not MDs and MDs are not insurance companies.
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I agree with David. When going from corp job to corp job, maybe talking about your conditions isn’t as big a deal. When there are hundreds of employees sharing the costs of health insurance. But if you were to ever need private insurance (i.e. you buy it yourself), talking about things like this could lead them to not cover you if they found it.
I was a contractor for a long period of my life, and I was INCREDIBLY protective of what ailments my wife and I did have. I wouldn’t tell anybody about them because you never know.
Now, on the flip side of that, I think it’s awesome that your wife got good information on Facebook. My wife has gotten and given good information on anonymous support groups. I don’t think you have to tie your ailment to your public profile.
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I agree with David. When going from corp job to corp job, maybe talking about your conditions isn’t as big a deal. When there are hundreds of employees sharing the costs of health insurance. But if you were to ever need private insurance (i.e. you buy it yourself), talking about things like this could lead them to not cover you if they found it.
I was a contractor for a long period of my life, and I was INCREDIBLY protective of what ailments my wife and I did have. I wouldn’t tell anybody about them because you never know.
Now, on the flip side of that, I think it’s awesome that your wife got good information on Facebook. My wife has gotten and given good information on anonymous support groups. I don’t think you have to tie your ailment to your public profile.
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Mrshl is right, there is a difference between privacy and secrecy. When I met you Robert at the NextWeb 2008 Conf in Amsterdam we had this conversation as I wanted to get your perspective and it seems your views are the same.
I think it’s about in-context value and what you as the person sharing this info is going to get out of it. For some it’s hard to see the benefits at first, especially if it doesn’t directly affect them or if they can’t personally relate to the idea. I come across reactions like Frank’s on a daily basis as well as reactions on the other side of the spectrum. It’s really a big paradigm shift, not just for physicians but patients as well. It’s not until you directly see the value do you “get it”.
It’s reminiscent to me back 10 years ago when we heard the same arguments about buying things online with your credit card. “You want me to do WHAT? Put my credit card info into this WEBSITE?”. But adoption grew, standards were enforced and fear/risks were mitigated. Now it’s as common place as it gets because people directly see the convenience and benefit.
All the reasons you gave are pretty spot on and there a ton more depending on the context of the medical/healthcare info you talk about.
With what we do, the context is for chronic diseases like diabetes and online diabetes management as well as integrate social support. WIthin this context it makes a lot of sense to not only track your progress/health status but share it with your support network as well (Friends, Family, Physicians). So from this standpoint, we highly encourage the sharing and encourage the collaboration between users and have built our platform around it. The diabetes community is known for being supportive and understand to one another along with being informative and educational to those who may not be familiar to the disease.
What’s ironic is that for newly diagnosed diabetics a common issue is feeling alone and like they’re the only one who has to deal with it yet there are 246 million diabetics (old stat) and an est. 1 billion pre-diabetics worldwide. So one of the question I ask myself when I get up in the morning is how can affect some sort of change so that is no longer an issue.
Whether it’s a big epidemic like diabetes or lesser known “weird diseases”, the opportunity and potential is there for those who wish to take advantage of it. Yet at the same time there will always be those who don’t want to share and they need to be equally respected. The tools need to be in place so they can opt out. In terms of online tools and resources, it’s not that hard. Think sharing groups/settings, ACL’s etc.
The previous paradigm has been highly physician centric, with “Health 2.0” it’s moving to the other side of the spectrum with the patient. But it’s not as much about being on one side or the other as much as it is about bridging both to facilitate education and more efficient collaboration for all involved (Patient, Physician, Patient Support, Payer etc).
There will be some who will be held back by many reasons, including fear of getting a job etc. But then it comes down to do the benefits of sharing this information in order to find more beneficial info out weigh that fear and risk. That highly depends on the type of medical condition and information you’re sharing as well as the level to which it affects you personally.
There are so many aspects, topics and directions involved in this discussion and it needs to happen. In general I feel it’s such an exciting time and feel the potential is just too big.
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Mrshl is right, there is a difference between privacy and secrecy. When I met you Robert at the NextWeb 2008 Conf in Amsterdam we had this conversation as I wanted to get your perspective and it seems your views are the same.
I think it’s about in-context value and what you as the person sharing this info is going to get out of it. For some it’s hard to see the benefits at first, especially if it doesn’t directly affect them or if they can’t personally relate to the idea. I come across reactions like Frank’s on a daily basis as well as reactions on the other side of the spectrum. It’s really a big paradigm shift, not just for physicians but patients as well. It’s not until you directly see the value do you “get it”.
It’s reminiscent to me back 10 years ago when we heard the same arguments about buying things online with your credit card. “You want me to do WHAT? Put my credit card info into this WEBSITE?”. But adoption grew, standards were enforced and fear/risks were mitigated. Now it’s as common place as it gets because people directly see the convenience and benefit.
All the reasons you gave are pretty spot on and there a ton more depending on the context of the medical/healthcare info you talk about.
With what we do, the context is for chronic diseases like diabetes and online diabetes management as well as integrate social support. WIthin this context it makes a lot of sense to not only track your progress/health status but share it with your support network as well (Friends, Family, Physicians). So from this standpoint, we highly encourage the sharing and encourage the collaboration between users and have built our platform around it. The diabetes community is known for being supportive and understand to one another along with being informative and educational to those who may not be familiar to the disease.
What’s ironic is that for newly diagnosed diabetics a common issue is feeling alone and like they’re the only one who has to deal with it yet there are 246 million diabetics (old stat) and an est. 1 billion pre-diabetics worldwide. So one of the question I ask myself when I get up in the morning is how can affect some sort of change so that is no longer an issue.
Whether it’s a big epidemic like diabetes or lesser known “weird diseases”, the opportunity and potential is there for those who wish to take advantage of it. Yet at the same time there will always be those who don’t want to share and they need to be equally respected. The tools need to be in place so they can opt out. In terms of online tools and resources, it’s not that hard. Think sharing groups/settings, ACL’s etc.
The previous paradigm has been highly physician centric, with “Health 2.0” it’s moving to the other side of the spectrum with the patient. But it’s not as much about being on one side or the other as much as it is about bridging both to facilitate education and more efficient collaboration for all involved (Patient, Physician, Patient Support, Payer etc).
There will be some who will be held back by many reasons, including fear of getting a job etc. But then it comes down to do the benefits of sharing this information in order to find more beneficial info out weigh that fear and risk. That highly depends on the type of medical condition and information you’re sharing as well as the level to which it affects you personally.
There are so many aspects, topics and directions involved in this discussion and it needs to happen. In general I feel it’s such an exciting time and feel the potential is just too big.
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a lot of people are unaware that part of Hillary’s original healthcare plan included a database of everyone’s medical records, essentially giving the socialized doctors the opportunity to deny care based on medical history. I know it sounds like a paranoid conspiracy rant, but it’s actually true. I think many people will soon learn that socialized medicine in this country is a bust like it has been in France and a slew of other countries, and back to the medical records issue- well I think it’s obvious that’s just wrong wrong wrong.
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a lot of people are unaware that part of Hillary’s original healthcare plan included a database of everyone’s medical records, essentially giving the socialized doctors the opportunity to deny care based on medical history. I know it sounds like a paranoid conspiracy rant, but it’s actually true. I think many people will soon learn that socialized medicine in this country is a bust like it has been in France and a slew of other countries, and back to the medical records issue- well I think it’s obvious that’s just wrong wrong wrong.
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I disagreed with Scoble’s original Tweet, that medical privacy “is dead” – but the message behind that, not that it is dead but that it is a bad idea, is sound in general.
As Gono says, you might want to make exceptions for certain conditions, like STDs picked up on a “business trip” – but even there, of course, that exception isn’t in OUR interests, only your own, so it’s still a bad thing.
Justin: you have to tell any insurance company about them anyway, or the policy is null and void! (Here at least, withholding anything remotely relevant invalidates the policy entirely.) If you’re required to disclose the information anyway to the one type of entity you want to hide it from, what’s the point in trying to be protective about that information with other people?
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I disagreed with Scoble’s original Tweet, that medical privacy “is dead” – but the message behind that, not that it is dead but that it is a bad idea, is sound in general.
As Gono says, you might want to make exceptions for certain conditions, like STDs picked up on a “business trip” – but even there, of course, that exception isn’t in OUR interests, only your own, so it’s still a bad thing.
Justin: you have to tell any insurance company about them anyway, or the policy is null and void! (Here at least, withholding anything remotely relevant invalidates the policy entirely.) If you’re required to disclose the information anyway to the one type of entity you want to hide it from, what’s the point in trying to be protective about that information with other people?
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James, for people with employer-sponsored insurance plans, disclosure of medical conditions is rarely required, either to your employer or to the insurer. And the incentives for secrecy are high (e.g., discrimination by your employer for expensive treatment, the fear that your insurer will share such information with your employer). For people buying their own coverage, and for the purchase of life insurance, the disclosure requirement is more common. Regardless, in certain situations (especially with genetic defects where expensive treatment will eventually become necessary), the incentives are a bit warped. Obviously, you want to know if you are predisposed to a condition or, if already suffering, you want to gain as much knowledge as possible about your condition. But sharing such information about yourself could put you in a fairly unhappy position: you become both unemployable and uninsurable. Without state-sponsored insurance or care, losers of the genetic lottery are in an awful bind.
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James, for people with employer-sponsored insurance plans, disclosure of medical conditions is rarely required, either to your employer or to the insurer. And the incentives for secrecy are high (e.g., discrimination by your employer for expensive treatment, the fear that your insurer will share such information with your employer). For people buying their own coverage, and for the purchase of life insurance, the disclosure requirement is more common. Regardless, in certain situations (especially with genetic defects where expensive treatment will eventually become necessary), the incentives are a bit warped. Obviously, you want to know if you are predisposed to a condition or, if already suffering, you want to gain as much knowledge as possible about your condition. But sharing such information about yourself could put you in a fairly unhappy position: you become both unemployable and uninsurable. Without state-sponsored insurance or care, losers of the genetic lottery are in an awful bind.
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dude, that’s the whole point. You gave up your information yourself. You made a choice. The whole idea of privacy is that you get to decide who to tell what to. If you wanted to keep it quiet you could.
If your insurance company told the world about it, you’d be mighty pissed.
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dude, that’s the whole point. You gave up your information yourself. You made a choice. The whole idea of privacy is that you get to decide who to tell what to. If you wanted to keep it quiet you could.
If your insurance company told the world about it, you’d be mighty pissed.
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dude, that’s the whole point. You gave up your information yourself. You made a choice. The whole idea of privacy is that you get to decide who to tell what to. If you wanted to keep it quiet you could.
If your insurance company told the world about it, you’d be mighty pissed.
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I personally would only divulge health information about myself or someone else anonymously or use an alias. Regardless, I believe that the concepts of privacy & confidentiality (as perhaps we used to know them) no longer exist, permanently. HIPAA (or spelled HIPPA, in some medical facilities) enforcement is in reality, despite all of the lip service it gets, just pathetic. I’ve looked the cases (jeepers, maybe it’s up to ten by now) – it appears that you’ll only get indicted if you violate HIPAA AND commit another felony such as Identity Theft on top of that (or disclose information about an FBI agent, in one case). Here’s just one reference: http://www.oig.hhs.gov/oas/reports/region4/40705064.pdf. There’s a lot more where that came from.
Do a Google search on HIPAA, and on the side you’ll see paid ads for . It’s really sick disgusting irony.
I know Doctors and Nurses who have violated HIPAA regulations. At a company I used to work for we had a head of Human Resources who would spill his guts like he was an old lady at a quilting bee if he had more than 4 ounces of beer. You’d be surprised (or maybe not) at what information makes its way from the hospitals to the insurance company, and then to your employer. If you were hospitalized, they could find out how many times you took a crap while you there.
And thank God for the Patriot Act.
If you want privacy, meet me in Antarctica.
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I personally would only divulge health information about myself or someone else anonymously or use an alias. Regardless, I believe that the concepts of privacy & confidentiality (as perhaps we used to know them) no longer exist, permanently. HIPAA (or spelled HIPPA, in some medical facilities) enforcement is in reality, despite all of the lip service it gets, just pathetic. I’ve looked the cases (jeepers, maybe it’s up to ten by now) – it appears that you’ll only get indicted if you violate HIPAA AND commit another felony such as Identity Theft on top of that (or disclose information about an FBI agent, in one case). Here’s just one reference: http://www.oig.hhs.gov/oas/reports/region4/40705064.pdf. There’s a lot more where that came from.
Do a Google search on HIPAA, and on the side you’ll see paid ads for . It’s really sick disgusting irony.
I know Doctors and Nurses who have violated HIPAA regulations. At a company I used to work for we had a head of Human Resources who would spill his guts like he was an old lady at a quilting bee if he had more than 4 ounces of beer. You’d be surprised (or maybe not) at what information makes its way from the hospitals to the insurance company, and then to your employer. If you were hospitalized, they could find out how many times you took a crap while you there.
And thank God for the Patriot Act.
If you want privacy, meet me in Antarctica.
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Hi Robert,
I’m sorry to hear about your condition. I would like to just offer you one thing which has helped me enormously. The book is Fit for Life by Harvey and Marilyn Diamond. An old hippy I befriended in the park turned me on to this book. He has traveled the world and the only way he can continue at his age is to eat right and combine it with yoga and exercise.
The interesting part was when I saw the book it looked familiar to me. I realized it was in my familys bookshelf when I was a kid. My mom worked in the GI Lab at Seton Medical Center so it doesn’t suprise me that the book was in the shelf. I just wish she would have followed it because I had kidney stones, pancreatitis and appendicitis as an adult. Once I read the book it opened my eyes to why I received each one of those problems. I now know how to combine my foods and I’ve stopped eating dairy and mean and just eat fruits, nuts and vegetables. The energy I have throughout the day has improved drastically. I’m willing to bet anyone you know who is very healthy has read this book. It can also help you lose weight.
So next time you see a hippy in the park you might want to say hello because they may have some sage advice which may help save your life!
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Hi Robert,
I’m sorry to hear about your condition. I would like to just offer you one thing which has helped me enormously. The book is Fit for Life by Harvey and Marilyn Diamond. An old hippy I befriended in the park turned me on to this book. He has traveled the world and the only way he can continue at his age is to eat right and combine it with yoga and exercise.
The interesting part was when I saw the book it looked familiar to me. I realized it was in my familys bookshelf when I was a kid. My mom worked in the GI Lab at Seton Medical Center so it doesn’t suprise me that the book was in the shelf. I just wish she would have followed it because I had kidney stones, pancreatitis and appendicitis as an adult. Once I read the book it opened my eyes to why I received each one of those problems. I now know how to combine my foods and I’ve stopped eating dairy and mean and just eat fruits, nuts and vegetables. The energy I have throughout the day has improved drastically. I’m willing to bet anyone you know who is very healthy has read this book. It can also help you lose weight.
So next time you see a hippy in the park you might want to say hello because they may have some sage advice which may help save your life!
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There are a number of reasons why I would not devulge this information publicly. The first is that it could be used by future employers in a screening process where those who do not devulge such information are given more consideration under the assumption they are healthy. Secondly, some medical conditions still have a large stigma attached and therefore it is best to devulge this information after you have known the person and they have seen that you are not a freak of some sort.
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There are a number of reasons why I would not devulge this information publicly. The first is that it could be used by future employers in a screening process where those who do not devulge such information are given more consideration under the assumption they are healthy. Secondly, some medical conditions still have a large stigma attached and therefore it is best to devulge this information after you have known the person and they have seen that you are not a freak of some sort.
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There are a number of reasons why I would not devulge this information publicly. The first is that it could be used by future employers in a screening process where those who do not devulge such information are given more consideration under the assumption they are healthy. Secondly, some medical conditions still have a large stigma attached and therefore it is best to devulge this information after you have known the person and they have seen that you are not a freak of some sort.
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err.. divulge, not devulge.
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err.. divulge, not devulge.
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Mrshl: The whole concept of employer-provided insurance strikes me as defective for other reasons anyway (from an economic point of view, it’s a large part of the root of America’s health insurance problems now) – and the idea of getting insurance without full disclosure … well, I think we’ve all seen plenty of examples of what happens when companies take risks they don’t fully understand over the last view months, haven’t we?
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Mrshl: The whole concept of employer-provided insurance strikes me as defective for other reasons anyway (from an economic point of view, it’s a large part of the root of America’s health insurance problems now) – and the idea of getting insurance without full disclosure … well, I think we’ve all seen plenty of examples of what happens when companies take risks they don’t fully understand over the last view months, haven’t we?
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It depends on which health issues you discuss. If you are diagnosed, as my boyfriend was, with a “very long colon” (LOL) it might make for some fun joking and wisecracks among friends as well as lead to a discussion in which he might learn about a product that helps him with digestion. But what if someone is diagnosed with something that still has a stigma? I’m not talking about Bi-Polar or Depression because it’s so common now that among most educated people, the stigma is gone. I’m talking about something like Borderline Personality Disorder or Antisocial Personality Disorder or other mental illnesses. Would you want people to know you were diagnosed with such an illness?
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It depends on which health issues you discuss. If you are diagnosed, as my boyfriend was, with a “very long colon” (LOL) it might make for some fun joking and wisecracks among friends as well as lead to a discussion in which he might learn about a product that helps him with digestion. But what if someone is diagnosed with something that still has a stigma? I’m not talking about Bi-Polar or Depression because it’s so common now that among most educated people, the stigma is gone. I’m talking about something like Borderline Personality Disorder or Antisocial Personality Disorder or other mental illnesses. Would you want people to know you were diagnosed with such an illness?
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It depends on which health issues you discuss. If you are diagnosed, as my boyfriend was, with a “very long colon” (LOL) it might make for some fun joking and wisecracks among friends as well as lead to a discussion in which he might learn about a product that helps him with digestion. But what if someone is diagnosed with something that still has a stigma? I’m not talking about Bi-Polar or Depression because it’s so common now that among most educated people, the stigma is gone. I’m talking about something like Borderline Personality Disorder or Antisocial Personality Disorder or other mental illnesses. Would you want people to know you were diagnosed with such an illness?
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I would agree that it’s up to the individual to decide what to share or not share. Obviously, we don’t want our medical caregivers giving out this information. Personally, I share medical problems on twitter because what I share won’t make a difference with respect to employability or insurance. If it were something like cancer, I think I’d share it because I’d get more support and advice; I think my first priority would be surviving. If I die, what good would my privacy do?
As for getting an STD or some other embarrassing disease, if you are the type to go out and do those things, chances are people already expect it from you. You’re not going to shock anybody.
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I would agree that it’s up to the individual to decide what to share or not share. Obviously, we don’t want our medical caregivers giving out this information. Personally, I share medical problems on twitter because what I share won’t make a difference with respect to employability or insurance. If it were something like cancer, I think I’d share it because I’d get more support and advice; I think my first priority would be surviving. If I die, what good would my privacy do?
As for getting an STD or some other embarrassing disease, if you are the type to go out and do those things, chances are people already expect it from you. You’re not going to shock anybody.
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I am a veteral. Right now my information is in the VA System. While I do cherish my privacy. I like the prospects that I can go to a VA anywhere and be taken care of. The problem is I guess how much invasion to accept.
Another good that could come from the sharing, is that the more information that you have on a subject or illeness. The better the resurch is in curing that illness.
So we weigh the benifit against the cost. At some point though, it will be determined by how the information is used. For any good can be offset with a bad.
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I am a veteral. Right now my information is in the VA System. While I do cherish my privacy. I like the prospects that I can go to a VA anywhere and be taken care of. The problem is I guess how much invasion to accept.
Another good that could come from the sharing, is that the more information that you have on a subject or illeness. The better the resurch is in curing that illness.
So we weigh the benifit against the cost. At some point though, it will be determined by how the information is used. For any good can be offset with a bad.
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Scoble, Welcome to the club of non-insurables. Forget about finding individual health insurance. No insurance company will underwrite you because now you have a Kidney disease. If you do get to ESRD/(CKD stage 5) at least there is Medicare. You have to work for a company the rest of your life. Sucks.
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Scoble, Welcome to the club of non-insurables. Forget about finding individual health insurance. No insurance company will underwrite you because now you have a Kidney disease. If you do get to ESRD/(CKD stage 5) at least there is Medicare. You have to work for a company the rest of your life. Sucks.
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I have issues with depression and anxiety. There is no way in hell I would post about this publicly, with my real name. Why? Because in this age of so-called great technology, we still are living in the Dark Ages, when it comes to attitudes about certain health conditions. For example, addiction has now been proven to be a physical disease, rooted in biochemistry and genetics, but the vast majority of people still ignorantly believe that it is a moral deficiency. A lot of people even still consider addicts to be subhuman, not worthy of compassion. So — even though we are fairly advanced technologically, we are still pretty primitive in our social development. For that reason, I don't think it's a good idea to go public on health issues.
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