1. By disclosing your weird diseases other people help you out and get you more information than your own doctor can. - Robert Scoble

2. By disclosing your weird diseases, other people give you ideas you would never have thought of. (This happened to me tonight). - Robert Scoble

3. By disclosing your weird diseases you feel better just by telling other people what's going on in your life. - Robert Scoble

You know about these guys, right? http://www.patientslikeme.com/ - Michelle Riggen-Ransom

4. By disclosing your weird diseases other people can make sure you don't "cheat" on your treatment plan. - Robert Scoble

Absolutely. We got lots of great information from blogs & forums when my husband was diagnosed with liver cancer. It was through social media that we learned the transplant programs in Shanghai probably used condemned political prisoners as donors. Also, doctors sometimes won't tell you things for fear of malpractice or being wrong. - Robyn McIntyre

It's not a violation of privacy if you chose to disclose your health issues. Privacy is violated when others access or profit from your record without your express consent. - David McCallie

Too many doctors, hospitals, clinics, etc. will trust m$ health vault and it will get hacked. - Mathew Packer

David: privacy is dead because you will share your diseases with the world before your insurance company even knows. Why? Because there are too many benefits to doing so. - Robert Scoble

Your disclosure is your business and always has been. It's others disclosures when you don't want it to be that's the issues I would think. - John Rubier

The interaction also provides a feedback loop into the medical community - esp in areas like Oncology where all sorts of mixed/weird treatments are being tried. Many docs are also experimenting with holostic approaches, incl diet and drugs. And the Genetics Testing whirlwind is about to hit - further stretching what we don't know and pushing people to seek out others with same genetic predispositions. - texaszman

5. By disclosing your weird disease, you don't get that job you applied for because they saw you have [insert weird disease here] - John Rubier

John: our ideas of privacy have totally changed. 20 years ago I would NEVER have told my community my weird diseases. Today? There's HUGE benefits to doing so. And, if you are on a medical treatment plan you should put your medications into an online database which can warn you about problems before your doctor will even know about problems. - Robert Scoble

I've shared my health problems to help others. Over time, the replies have been numerous. Eventually someone knows someone close to them, etc. Sadly, the old small blog is gone, now it's just a squidoo page with little traffic :( - Ed Shahzade /NextInstinct

John: that is one risk, yes. But, I think that will change too. - Robert Scoble

#5 will probably be the big reason, actually I recall someone getting busted and losing their medical compensation claim because of a status update on their facebook.. - Mathew Packer

Weird diseases? Oooh! So apart from the kidney thing the doctor told you what, exactly? :) - WoH: Minding her Botts

The real issue is what happens when privacy is lost. Currently, you'd probably lose the ability to get insurance, or perhaps to retain or get a new job. We need to fix the laws to protect us from inadvertent (or willful) disclosure of personal health data. The GINA laws are a step in the right direction, but they only apply to "genetic" information (as if there is any health information that isn't at some level "genetic!") - David McCallie

For the majority of people there is very little value for someone to gain from finding out you are having an invasive procedure such as a colonoscopy, have a health problem or have a funny rash. There are much larger health benefits to be gained by allowing your healthcare provider to openly share you information between providers/organizations. There is also much social value in having information open for research. - Robert D. Fraser

Mathew: the thing is, the insurance world now knows about my condition. So, if they are going to discriminate against me, they already have that info. In the meantime, by keeping it quiet I don't get the other benefits. - Robert Scoble

however, will disease disclosure online prevent you from getting a job much like your drunken myspace pics? - ishak

Robert: the example I mentioned was someone with a back injury from 'work' who was receiving compensation benefits and posted something on their facebook about getting injured in a football game that same week. - Mathew Packer

privacy has been dead for awhile...but just because it's online, doesn't mean your next door neighbor knows your inner truths - clarke thomas

Agree with David - it is you being open, rather than health system not respecting your privacy. Doctors have malpractice issues if advice is given when they can't back up with clinical research and that is years behind what people are trying.It is the advantage of you sharing with your network. Others sharing is a breach of your privacy. - Kate Tribe

Robert Fraser: I disagree. My wife recently shared her funny rash (her doctor thought she had an infection and was trying to treat it with anti biotics. One of her Facebook friends said "looks like you have Shingles." Turns out the doctor was wrong and the Facebook friend was right. - Robert Scoble

I don't think privacy survives when you sign off on that 18 page HIPPA notice when you check in, anyway. - LinkingIndiana

re: health privacy - are people just not getting what scoble means here? if the advantages to being open about these health issues are great enough (and the advantages are becoming greater due to social networks for instance) then health privacy will die because nobody really will want to keep these things private .... nothing to do with the doctor/hospital side of things - Chris Heath

ishak - Well Robert's drunken myspace pics didn't prevent Fast Company from hiring him ;) - John Rubier

Chris: exactly. We are in a weird place where insurance companies can use this data against you (if they don't have it already, which in my case isn't true). There are other cases where diseases are socially negative, like sexually-transmitted diseases. But people will see that for 98% of the health problems they'll have there's a benefit to talking it through online. - Robert Scoble

exactly robert, and even with the socially negative ones there's always the 'anonymity' of the intarwebs - Chris Heath

Certain parts of our medical history have been for sale for a long time, insurance companies, the MIB, been writing about this for 2 years, it's really almost who writes the best algorithms, I post more breaches about government systems than private industry, DOD 2 weeks ago - MedicalQuack

Health privacy died when HIPPA was enacted. Personal Identity protection became compromised when we were stamped with Social Security numbers. Whenever the government enacts some policy to protect us we inevitably become sitting ducks. - Rick Savoia

Don't you owe us 20 more reasons? :-) I became a big believer in sharing when the Internet helped me find others having the same reaction to a new MS drug & discover what other drug we all had in common Happened in 1995! Company was stunned, but soon shared "possible interaction" on warning list - MaryAnn Chick Whiteside

health privacy can still be kept if you can post an illness anonymously and let people help out. You can, of course, tell your friends that you are the one who posted it. :) - Rom Feria

@Robert See dm's? - Ed Shahzade /NextInstinct

Sorry, I meant in there is little value or leverage for hackers to gain from finding out about that rash. I work in healthcare, and the reason we don't have extensive electronic records are because there is a lot of concerns about 'privacy'. The perception is that health records are a huge risk, yet there is no value if some one 'hacked' or stole the information relating to your wifes shingles, but there is tremendous value in having your allergy or related medical info when you move around in healthcare. - Robert D. Fraser

More importantly, there are billions of dollars traded arcross the globe daily and people are still unsure if they want to have an electronic health record, why is this? - Robert D. Fraser

Lately though there are more paper medical records being trashed and found, one guy burned his chimney down trying to burn old med records, one guy paid around $50.00 at an auction for the unknown contents of a storage unit, well it was packed with boxes of medical records, all with the usual SS# and credit card information for patient payments. Lucky he was an honest guy this time, but had a police record for other violations, so there's no safety in paper either.http://ducknetweb.blogspot.com/2008... - MedicalQuack

Robert...here are two beta initiatives you, in part, inspired me to compile. Leveraging both Twitter and FF in the interest of patients and reforming the health financing and delivery systems....www.HospitalTwits.com and www.DocTwits.com. - Gregg

The government is not quite set up to police it at all either, here's a story where many billed Medicare with false claims under dead doctor names, so there was no cross reference on the doctor's ID, so those dead doctors were busy seeing a lot of patients. http://ducknetweb.blogspot.com/2008... - MedicalQuack

One more interesting story about extortion with Express Scripts,, pay up or the thief is ready to throw thousands of records out on the web, FBI and forensics working this case like crazy. http://ducknetweb.blogspot.com/2008... - MedicalQuack

What works for me is posting health woes in a semi-private place like Facebook. I had no idea that several of my friends had thyroid and/or adrenal issues, and we wound up having really helpful discussions. With 225+ friends, I'm guessing there will always be someone who can give advice without worrying about insurance companies finding out. (Although I'm on a high deductible self-employed plan...and barely make a dent in said deductible, so I personally am not worried about this...) - webojunk

Makes me think of this post by Fred Wilson... http://www.avc.com/a_vc... - Mike Doeff

Last week was a big success for the US Attorney's office in shutting down a company called Ingenix that sold your medication data for $15.00 a pop to any insurer and the were using it to deny claims and coverage, and it was owned by United Health care, so not only is privacy gone but we are for sale too! There's still one more company out there doing it and hopefully they will be next, Ingenix made 1.3 billion last year. Wash Post story: http://www.washingtonpost.com/wp-dyn... - MedicalQuack

Is it not true though in the US that you can be turned down for treatment if you are found to have had a disease previously that you have not been to your doctor about? That seems like something that should be taken into consideration when disclosing online. Don't the insurance companies employ private detectives to check that kind of stuff out? - Nicola Quinn

Anyone out there know anyone that had nerve/groin pain after suburethral sling surgery? My latest, weird surgical complication... in an otherwise totally healthy and uncomplicated gal. It is being addressed by my great doctors, but just curious if there is anyone out there that went through this and had a great outcome. I would like a place to find this stuff quickly and simply online.... but don't really want to discuss it with Facebook friends or Twitter... Something more annonymous would be good. - Colleen

I agree, you can find a lot of information online that your doctor's will not tell you, and in some cases... ie... when something goes a bit wrong... this is important. Recently happened to me, and I found good information online. Privacy will always be maintained in hospital/doctor's office environment, but yes, people will choose to discuss their own health issues online. - Colleen

The whole health privacy argument is a ruse. If you think your records are private, think again folks. Most IT depts in hospitals have extremely poor security practices, health insurers, well they like to do all sorts of things with your data and for most cyber-criminals, about the only thing interesting in your record is your SS#. The privacy ruse is simply put out there by various parties to insure that he who own the data, owns the customer relationship. - John Moore

Thanks Robert for bringing this issue up. About time it received more balanced "airplay". - John Moore

Could we generalize that to: "Privacy is dead"? :) I think that's the end balance... - Meryn Stol

Not for pharmacies it's not. HIPAA scares the hell out of us. - Jim Shireman

Privacy is your right to withhold that info if you wish. If you're sharing it then good for you, but others don't have to if they don't want to. I think a lot of people don't understand privacy and so they're willing to call it dead. I have spoken about my epilepsy because I wanted to. I'm also aware that you don't trust everything you read on the net - many people are misdiagnosing themselves because of other peoples conversations causing a strain on healthcare as they turn up whenever they feel off. - alphaxion

HIPAA d/n apply when a patient discloses their health records.GoogHealth & MSFT HealthVault don't comply with HIPAA b/c patients, not healthcare providers, disclose personal data. Ever tried to read your (probably mostly paper) medical records? Expect chaos, confusion, scary/confounding notes & references to family history, family members, maybe mental health. Be careful before disclosing. Relying solely on wisdom of non-medical professional crowds for diagnosis or advice has considerable downside risk. - Tom Stitt

Robert: Here is a good example to illustrate some of your points: http://bit.ly/nbcp. - Niranjan Tulpule

One thing I believe is very important is to be careful what you share and where as you never know who's looking, could be anybody, so to discuss a condition you really have, use an alias on discussion forums. On another forum with doctors, one MD was looking to hire a new med asst, looked on My Space and found his prospective new employee sitting on the beach topless, smoking a joint, anyway that's the type of stuff you want to be careful where and when you share. Anyone could be looking. - MedicalQuack

Have you got something to hide? Actually I can see companies sussing out places like this out to expose people who cheat the system. Easier than following someone around for months on end... - Terry O'Fee

the communities that deal with health issues always show users anonymous nicknames - not their real names. - Alensa

The problem always comes back to the fact that a Profit-Making Insurance Company MUST discriminate against those who represent a higher risk of loss/high costs, making Profit-Making Insurance Companies a TERRIBLE thing to include in a Health Care System intended to provide quality care to all. Also, when the employer pays for even part of the insurance it makes health a part of the employment decision, which it shouldn't be. Nothing about privacy, everything about failures of a for-profit system. - The Web's Wendell Wittler

Caution is name of game here... Recognize analogy that is happening FOR REAL with college applications officers. One of the 1st things they do circa 2009 when processing prospective students is to Search FB & MSpace. As adults we have to lead our youth and help to present a respectful outward image. *** Per Health Care, I agree that support groups and the like will yield (and have done so in case of my personal family) COUNTLESS new insights where your GP or Specialist may not be fully up to speed. - Jeff Ploetz

focused support groups / chat rooms such as www.BrainTrust.org were a God Send to me as I grasped for ways to learn, 1st hand, what to expect and how to assist my bro-in-law who is 300+ miles to the west. http://giving.roswellpark.org/NetComm... .. I offer this secure free PHR @ https://www.WorldMedCard.com - Jeff Ploetz