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 ………………………………..
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 29th, 2009 by Trisha Torrey
(To my patient-readers: feel free to pass this one up. It’s aimed at my fellow healthcare bloggers who have been participating in a program begun by Wellsphere. Wellsphere made a business move that is quite unpopular and has made many members of the health blogosphere very cranky….)
I’ve pondered this for two days now. I try not to be quick to pull the trigger, and I generally give cummupances some thought… but now it seems like it’s time to share those thoughts with my fellow professionals and healthcare bloggers. I can’t be the only one who thinks this way….
Some of you are over-the-top upset at the sale of Wellsphere to Health Central because you feel as if someone has now made money off your work.
You’re right. They have.
Some of you are “I told you so-ing,” practically with glee, as if you’ve had some great revelation that yes! They DID want to make money! As if you knew there was something sinister when you were contacted by Geoff Rutledge and asked to participate.
You’re right. They did want to make money.
But I ask you — is making money a bad thing? It’s a trick question, so don’t answer just yet.
I bring to you a different perspective. I don’t ask you to agree with me. I just ask you to consider a different point of view for a moment.
I’ll begin by asking you a question: why do you blog? Why do you write or broadcast or podcast or videocast online?
Most of you will answer at least a portion of the same answer I would give. I blog because it allows me to offer information to others, and share my perspective. I blog to help patients understand the dysfunction of American healthcare and improve their ability to access the excellent care that does exist (when they can find it.) I blog because it helps me drive people to my other work online — at my personal website (that houses my newspaper columns), my radio show website (that houses podcasts of the show I host), and my About.com website (that houses a little bit of everything.)
I don’t blog to make money. My personal blog does earn me (and I’m not kidding) about $1.52 each month from syndication. But I never did begin blogging to make money from my blog. I blog for exposure.
So when Wellsphere came along, I saw it as an opportunity to maximize exposure. And it has done that for me, according to my stats. In fact, my blog numbers (about 4,000 people per month) doubled when my blog began to appear on Wellsphere.
Wellsphere is a business. I knew they would make money. Wellsphere never made me any promises of payment. I never expected to get any payment. They haven’t stolen my content or anyone else’s. They have borrowed it. They have (and this is important) a NON-EXCLUSIVE right to it. That means I can do whatever I want to with mine, too. And you can do whatever you want to with your writing, too. Even sever your relationship with Wellsphere if that’s what you choose.
Yes – they are in business to make money. That was why they built the site. You must have known that when you signed on. Why on earth would they build it if they didn’t intend to make money from it? It certainly wasn’t out of the goodness of their hearts!
And most of you, my fellow bloggers, have an income stream, too. However, I’ll bet none of you makes a living from healthcare blogging! We all make our living in other ways, and blogging is one of those tools responsible for helping us make that living (or, maybe, helping us to cope with it?). Knowing that, then increased exposure can only be a good thing.
Yes, yes… I’ve heard that the owner can be a real SOB. I have heard that people changed jobs, got fired, weren’t happy with their tenure working there. I am sorry for them. But this is not that, and we are not them.
At the end of the day, Wellsphere hasn’t done anything devious. They are making money. There was no hidden agenda except, perhaps, that they passed us off to Health Central. That was unexpected, but other than that, the relationship hasn’t changed at all. They are publishing our blogs, aren’t giving us any cash, but we continue to gain exposure for our work.
In fact, the only real difference is that now we will get even more exposure.
Would I like it if they sent me a check? You bet! Would I like to share in that big payoff? Of course!
But…. I don’t fault Wellsphere for making what was purely a business decision. I actually applaud their ability to do something positive in this horrible economic climate.
Above all else, I’m happy to know that even MORE patients, those who need help, and those who can contribute to this blog full of ideas, will find the opportunity through Health Central.
As I said when I began — I don’t ask you to agree with me. I ask only that you understand a different point of view. Hopefully the mutual respect remains. We can always agree to disagree.
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
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.