Health Privacy and Silicon Valley…

For the past week, this rather provoking nugget of insight has been floating around from a person (Robert Scoble) who has become a high visible and open person about his doings and daily experiences. What I find most interesting are the comments from various Health-thinkers, bloggers, and Tweeters.

I will be the first to admit that this group represent a small segment of the population, but the comments truly elicit self-evaluation and insight into just want does “Privacy” mean to individuals?  Are what people MOST concerned with “privacy” or more likely “control” of one’s personal information? There’s no answer in the conversation below, but it certainly sirs ideological positions.

The original string of thought can be found at FriendFeed (a conversation aggregation tool that I love) for Robert Scoble http://friendfeed.com/e/08954685-00fe-4e55-b28f-4b99f83bfb0d/Health-privacy-is-dead-Here-s-why/ PLEASE, please, puh-leeeazee add to the conversation and perspective.  Below are some samplings of the discussion:

“Health privacy is dead. Here’s why:”

January 20 at 10:25 pm

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

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

I always love it when Scoble tells why something is dead, especially when it’s alive. – genieyclo is legal

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

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

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

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

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

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

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 – Barbara Duck

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 – mcwflint

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

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…) – Carolyn

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/… – Barbara Duck

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

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

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

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

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.  – Jeff Ploetz