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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.
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...
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.
Great topic!
~Heidi
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.
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."
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.
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.
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?
If your insurance company told the world about it, you'd be mighty pissed.
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.
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!
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.
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.