Will Collective Wisdom Improve Our Individual Health?

I told you about the Harvard professor who wants 100,000 people to add their health information to a database to help unlock the genetic code. He's looking for collective data to create opportunities for new medical applications.

Newsweek brings us information about collecting health information differently, for a different purpose, but for a similar outcome. I love this approach because it's of immediate use for you and me. But there are cautions -- take note!

Web 2.0, Medicine 2.0 and Health 2.0 -- these concepts mean that the ability to share information about ourselves through use of the Internet, is available to "just us" -- people like you and me who need only four things to do so: a computer, an internet connection, time and a reason to connect with others. In other words, use of the Internet is not reserved for just the professionals (TV and radio, before the Internet was in use, could only be broadcast by professionals.)

This "everyman" or "everywoman" capability means that communities are built by people with common interests. In healthcare, we can see examples of communities of people with different diseases, or different wellness interests, or others. Here on About.com Health, you'll find people sharing information about more than 100 different health concerns and interests.

In some of these communities, people are asked, and share very intimate details about their health; thus the Newsweek story which asks -- should we? One website, PatientsLikeMe.com gets very specific -- and the idea is definitely devoted to the greater good.

But there's a very solid line between the greater good, the benefits to individual patients, and those who would use that information in unacceptable ways. We patients need to be careful about sharing details that can harm us.

So here are some thoughts and warnings for those of you who are interested in sharing.

• Remember that once information is put online, it stays there. Even if you remove it or delete it, it is still archived, and if someone wants access, they can get it.
• Remember that no matter how secure the website host claims your information is -- it's only as secure as the guy who decides to break into it. Think about all the social security numbers that have been stolen -- we read about them in the news all the time -- that can happen to your information, too. This warning is for sites like Microsoft's Health Vault or Google Health or Revolution Health. You have to remember that they aren't providing storage space to you for YOUR health. They are collecting it for theirs.
• Even though it's now against the law, you can't be sure that health insurance companies, life insurance companies or even employers won't get ahold of information about you and use it against you. It may be against the law -- but how could it ever be proved?
• If you do want to share information -- whether it's for the greater good or not - then make sure you don't give so much information that you can be identified as an individual. Give yourself an alternative name, or use only your first name and not your last, and set up a separate email account with that same info so your usual email address can't be tied to you. Don't share your address, or even the area you live in.
• Don't confuse these "greater good" sites with EMRs -- electronic medical records -- storage used by doctors to house all your records. There are a number of benefits to EMRs that have nothing to do with the greater good.

For the sites that encourage YOU to do the sharing -- that's where you need to be careful. I hope you've heard these cautions loud and clear.