Archive for the 'Privacy and Security' Category
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.
June 24th, 2008 by Trisha Torrey
For those of you who have read my misdiagnosis story, you know that one of the ultimate heroes was the pathologist (I’ll call him Dr. H.) who helped me understand how the misdiagnosis happened. Even though he was one of the doctors responsible for getting it wrong, in the end, he didn’t turn away or try to avoid me. Instead, he explained to me how the mistake was made. He even apologized. There was some relief in that, even though it didn’t change the outcome.
Fast forward four years. Last week I was invited to visit Dr. H’s lab, the lab where my specimen was mis-read, the one where my misdiagnosis really took root. It’s a hematopathology lab, meaning specimens like lymphomas, tumors, abnormal growths. What Dr. H wanted me to know was that procedures and policies have been changed. In his words, had I not brought the inherent problem-causing procedures to their attention, had I not held their toes to the fire, they’d still be doing things the old way.
And people might still be getting misdiagnosed.
For this woman who has fought on behalf of patients for four years…. that was a melt-down point. All good. Dr. H. showed me how the processes have changed. It’s a way of handling paperwork and the eventual reports that are issued. It turns out my misdiagnosis was more about piecemeal reporting, and less about bad science.
The tour lasted about an hour. I saw all kinds of specimens under microscopes, printed reports, color-laced spots on a computer monitor (all well protected so I saw no names — good privacy) — and when we were finished, and I did understand how the original mistake had happened, and what was being done for today’s patients to prevent it from happening again…. I asked only one thing. This, from my follow up email to Dr. H – and I’m quoting:
I recognize that there will always be a certain number of mistakes that will happen in the reading / conclusions drawn from samples / specimens. I’ll never forget your words to me those four years ago – that you were taught in medical school that there will be mistakes, but if you have to err on one side or the other, you would want to err on the side of getting someone treatment they didn’t need, as opposed to missing a diagnosis that would require treatment. I understood it even then. It makes sense. And I agree that it’s probably best for the majority of patients.
But when I look at those 10,000+ numbers of specimens being reviewed each year, I have to think there is some of the human aspect being lost. As you will remember, I did ask the one woman in the lab where we reviewed the lined up chromosome reports, about aligning the work you do with the people who are represented by all those samples. I do understand the responses you both gave me about objectivity, but I still feel it’s important to make this emphasis: I don’t think it takes away from objectivity to remind yourselves on occasion (as an entire group of lab professionals) that each report is followed by emotion of real human beings who are receiving answers about their lives. Each one of those samples represent life, death, debilitation, illness – short term or long term. If the three most important things in life are love, health and the finances needed to support them, then your results have an impact – positive or negative — on all three. The reaction upon hearing whatever the news is – good, bad or still unknown — is always emotional in nature. Total joy, crippling sadness and upset, worry, fear, whatever it is – it’s human.
I’m not suggesting you need to know individual names, faces and personalities to align with samples and test results. I’m just suggesting that they be regarded for what they are – the determination of what the rest of someone’s life is going to be. Making that connection would, hopefully, compel the people who are figuring out the answers, the people who work in your labs, want to get it right even more often than they do. How well do they understand that they hold someone’s life in their hands when they arrive at their answers? Could such an emphasis improve the quality and success rates of your results? I realize not every specimen is a life or death situation. I imagine some are as simple as strep throat or some other fairly ordinary malady. Even still, to the person who may not be able to afford the medicine needed to get rid of that strep throat, even that could be a big deal.
There was more, of course…. but that’s the gist.
Bottom line — I am highly appreciative of this opportunity to visit Dr. H’s lab, to observe how their work is done, and most of all to be so gratified that the procedures have been changed and fewer people will be misdiagnosed.
It was a pivotal moment in my career and my life.
October 5th, 2007 by Trisha Torrey
For the past four weeks, listeners of my radio show have heard a series of tips I’ve given about PHRs – personal health records.
The underlying message has been: keeping your personal records in digital format can be a good thing. But do not — under any circumstances — move them to the web! No way!
Then there’s the news in the NY Times focuses on Microsoft’s launch of their new PHR system, inviting patients to log on and upload their personal health information to Microsoft’s servers.
I’ve blogged about this before.
Repeat after me: THERE IS NO SUCH THING AS INTERNET PRIVACY OR SECURITY for the common internet user — meaning us. NOT if your information is being stored online.
Worse — your information will be used AND sold by these organizations. They aren’t offering this service from the goodness of their hearts, after all. They are offering it to make money!
Do you have arthritis? If so, their web ‘bots will read your file and you’ll find an arthritis drug ad parked next to your arthritis information.
Is your weight a bit on the high side? Or do you have a problem with your cholesterol? You’ll find ads from Weight Watchers or Lipitor, or whatever is appropriate.
Does that sound like privacy to you?
Further — you’ve heard in the news many times about personal information being lost or stolen. From TJMax and Marshalls to Monster.com to the federal government — it happens every day. What makes you think your health records are any safer than your social security number or credit card numbers?
If you want to keep your personal health records on your computer, that’s OK. Even if your computer security gets breached, they won’t be looking for your health records because selling one individual’s health information isn’t particularly lucrative.
And if you want access to your records in an emergency – there are ways of doing that , too. Link here to see a How-To posted on my Every Patient’s Advocate website.
By all means, keeping track of your medical care using a personal health record is a great idea. Just don’t put your information on the internet if you want to keep it private or secure, no matter what those websites tell you about their encryption or security. In this case, it sounds too good to be true — and you betcha — it is.
October 5th, 2007 by Trisha Torrey
For the past four weeks, listeners of my radio show have heard a series of tips I’ve given about PHRs – personal health records.
The underlying message has been: keeping your personal records in digital format can be a good thing. But do not — under any circumstances — move them to the web! No way!
Then there’s the news in the NY Times focuses on Microsoft’s launch of their new PHR system, inviting patients to log on and upload their personal health information to Microsoft’s servers.
I’ve blogged about this before.
Repeat after me: THERE IS NO SUCH THING AS INTERNET PRIVACY OR SECURITY for the common internet user — meaning us. NOT if your information is being stored online.
Worse — your information will be used AND sold by these organizations. They aren’t offering this service from the goodness of their hearts, after all. They are offering it to make money!
Do you have arthritis? If so, their web ‘bots will read your file and you’ll find an arthritis drug ad parked next to your arthritis information.
Is your weight a bit on the high side? Or do you have a problem with your cholesterol? You’ll find ads from Weight Watchers or Lipitor, or whatever is appropriate.
Does that sound like privacy to you?
Further — you’ve heard in the news many times about personal information being lost or stolen. From TJMax and Marshalls to Monster.com to the federal government — it happens every day. What makes you think your health records are any safer than your social security number or credit card numbers?
If you want to keep your personal health records on your computer, that’s OK. Even if your computer security gets breached, they won’t be looking for your health records because selling one individual’s health information isn’t particularly lucrative.
And if you want access to your records in an emergency – there are ways of doing that , too. Link here to see a How-To posted on my Every Patient’s Advocate website.
By all means, keeping track of your medical care using a personal health record is a great idea. Just don’t put your information on the internet if you want to keep it private or secure, no matter what those websites tell you about their encryption or security. In this case, it sounds too good to be true — and you betcha — it is.
