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 22nd, 2009 by Trisha Torrey
I’ve written many times before about electronic medical records, personal health records and privacy. They can’t effectively be used in the same sentence unless you bring up oil and water, too. They just don’t mix.
An incident right here in my office spawned this post. Twice in the past week, a stranger’s medical records have arrived through my fax machine! They come from an orthopedic practice, are several pages long, and regard a police officer who had back surgery and is not working, collecting worker’s comp. They are very personal, detailed….
And I should NOT have copies! The fact that they were sent to the wrong fax number — twice — is a huge HIPAA violation. Yet, I guarantee you, this happens every day.
Why do I raise this point to you? Because concerns over privacy and medical records are huge. But that’s not new ! In fact, when it comes to medical records, regardless of HIPAA laws or anyone’s policies to the contrary, if someone wants your medical records, they can get them.
Here are some additional examples of privacy violations to give you a sense of what I mean:
Further, there are many people who can access our records whether we want them to or not. They include any payers who will pay on our behalf, such as health insurers or Medicare. Law enforcement personnel can access our records, too, if they believe they need them to prove a case.
What’s the bottom line here? If you want your records to be private, then it is up to YOU to make sure they stay as private as possible. Especially now that our new president is planning to throw money into the electronic medical records pot.
Our records are going to end up online. And I believe they should. It’s efficient, and I believe there are enough ways they can contribute positively to both our health, and our health system, that it’s a smart move.
But that doesn’t mean we patients have to make stupid choices about putting them online ourselves. There are a handful of PHR programs out there like Microsoft’s health vault and google’s health program, plus others that aren’t beholden to the HIPAA privacy laws. And, very frighteningly, large health organizations are working with these companies to put your records online. The Cleveland Clinic is working with Microsoft, as is the Mayo Clinic.
So when it comes to making smart choices, begin by making smart decisions about how your records will go online. Do NOT choose one of the free PHR (personal health records) applications that keep your records online, that does not fall under the auspices of HIPAA. There are plenty of good PHR storage apps online that charge you a fee, that may be more secure.
You may also want to ask about your doctor’s use of electronic medical records, and how they are being implemented. Specifically you want to know if the storage mechanism your doctor uses falls under HIPAA’s regulations. And if they tell you your records are being managed by one of these big conglomerates that are (so called) free? Personally — I would find another doctor to work with.
Your records will never be completely protected from someone who might want them. But there’s a difference between letting the medical records cat out the door, and leaving the door open.
Learn more:
January 9th, 2009 by Trisha Torrey
Not sure what it looks like where you live, but it’s cold outside where I live in Upstate NY, and we’ve got plenty of the white stuff on the ground.
Whereas some friends might curl up with a good book, I tend to gravitate to puzzles and thought provokers when I’m indoors and have some time on my hands. So I thought I’d provide you with a few links and summaries. I’m curious about your opinions:
1. Scenario: Your Uncle Henry lives in Rural-alia and needs prostate surgery. His primary care doctor refers him to a general surgeon who provides Henry with a list of all the side effects and describes the surgery and potential, probably outcomes, including incontinence and impotence. Uncle Henry settles on a date for the surgery, but confides in you that he’s really frightened and does not want to live with those side effects.
Questions: Do you suggest to Uncle Henry that he go into the city to find a second opinion? Do you tell him there are newer forms of surgery that may minimize the chances for those outcomes? Is it up to the surgeon to explain to Henry that there are other hospitals and surgeons that can do a better job?
Background: Should patients be told of better care elsewhere?
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2. Scenario: Aunt Genevieve has been hobbling around for years on that bum knee of hers. She finally lets you talk her into visiting an orthopod, and he tells her she really needs to have her knee replaced. She follows through, the surgery and recovery are a bear, and she begins to have real problems almost immediately with the knee not really working right. Then, as you dig into more information for her, you find out her surgeon is actually one of the inventors of the knee which was used in the surgery.
Questions: Do you confront the surgeon about the problems? What do you ask him to do about them? And does it matter that he owns the patent (and therefore makes money) for the artificial knee? Should he have disclosed that fact to Aunt Genevieve?
Background: Don’t be a victim of medical marketing
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Thoughts on either one? Just hit the “add a comment” button below…
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.
