January 31st, 2009 by Trisha Torrey
Here’s an update on my Every Patient’s Advocate activities
for the week of January 25 to 31:
See this icon? 
It means this link includes an opportunity for you to participate, beyond just a comment. However, please remember that your comments to any article or post are always welcome.
This icon 
indicates a piece that has attracted a lot of attention.
Blog Posts ………………………………..
Articles ………………………………..
Radio (Podcasts) ………………………………..
HealthLink on Air Guests — January 25:
Dr. Jeremy Shefner on Lou Gehrig’s Disease (ALS) and Sharon Bauer, RN on Peripheral Stem Cell Transplants, plus review of a headline about premature infant deaths by Dr. Dave Smith, president of SUNY Upstate
Information is temporarily unavailable.
January 27th, 2009 by Trisha Torrey
For several years now, I’ve sounded the warning bells — stay away from those websites that allow you to put your own health records online for free….
You can’t imagine how much grief I’ve taken for that statement. Especially when I point out that organizations like the Mayo Clinic and the Cleveland Clinic are actually partnering with the likes of Microsoft HealthVault to put patient’s personal medical records on the web.
And I still say — NO!
Wait! You say. Isn’t that what our new Obama-led government wants us to do? Electronic Medical Records are good for our health! They are good for our economy! They are good for our country!
Not so fast!
First — the distinction between those EHRs, electronic medical records that are kept by practitioners — doctors, hospitals, nursing homes. They use proprietary programs that may allow access to patients, but are not set up for patients to add their own information. These are the kinds of records being promoted by our new government, and I say — go for it. Great idea. They will save lives and grief.
But there is another kind of record known as a PHR, personal health record. There are a dozen ways to keep records, including on your own home computer or on a thumb drive, or even in a shoebox. And, they can be kept online for those who are willing to fill out tons of forms and scan and upload some of their information. Some programs exist that charge a monthly or annual fee. Not expensive, but enough that you can at least trust your information with them (as well as it can be trusted anywhere — another conversation for another day.)
But some of those big online health groups like Google, Microsoft, Revolution Health and others want YOU to put your OWN information online. and — lucky you! They’ll give you the space online for free!
You know there’s no such thing as a free lunch. And there’s no such thing as free space online for your health information. And while I’ve said that for years, and while many have dissed me for doing so — the proof is now published.
The problem is that these companies want to sell your information to the highest bidder. Maybe they can sell it to a pharmaceutical company or a drug store chain. Maybe they’ll sell it to the Medical Information Bureau that will tell its member-insurers what your medical problems are (so they can decide not to insure you.) Or maybe your employer wants to know whether to keep you on staff, or even hire you to begin with?
Believe me, despite what they claim they “want” to do for those unsuspecting people who put their health information online — their real goal — the goal they MUST have (by law because they are beholden to investors) — is to make money. They are not offering you that space out of the goodness of their hearts.
And now, it turns out that not only do they want to sell our information, Google hopes to get a piece of the federal money pie being set aside for electronic health records, too?
I’ve said it before. I’ll say it again. If you want your health and medical information to stay private, then STAY AWAY FROM THE FREE PERSONAL HEALTH RECORD applications. It can’t be any plainer than that.
January 24th, 2009 by Trisha Torrey
This is a question being discussed these days through social networking sites — you know, those Facebook and Twitter and MySpace and Plaxo and LinkedIn and Ning and other sites where you can carry on conversations with “virtual” strangers….
So I’m curious. Have you sought health information through social networking? Do you Twitter? or have a page on one of the other sites?
Please take this poll (it will take you, oh, 3 seconds or 4)…
And if you do use social networking for your health, will you share some of your tips so others may do so, too?
Here are some links:
Use Social Networking for Health Information
How to Use Twitter to Find Health Information
December 18th, 2008 by Trisha Torrey
I was excited to hear that the new secretary of Health and Human Services, Tom Daschle, was reaching out to the American people for input on what a reformed healthcare system would look like. Imagine — asking the people who must participate. What a unique and exciting concept!
That was… until I actually went to Change.gov and read about how these “Healthcare Community Discussions” were deemed to take place.
And now? I’m not sure that’s his intent at all.
Read what I have to say about it all.
