June 22nd, 2009 by Trisha Torrey
Please note the launch of this blog post — Monday, June 22, 2009 at 9 PM Eastern time… this blog post is part of an effort being launched across the country to make it very clear to decision and policy makers that American patients expect full access rights to their entire health records.
Why?
Because even though the laws are supposed to protect those rights, we find that we are in the midst of arguments about whether that will truly happen with the advent of electronic medical records.
Here’s how and why:
One of the major and important steps in rebuilding the American health system through reform is the creation of an electronic system that will allow the sharing of information from patient to doctor, from doctor to doctor, from facility to doctor and back — but if many of the professionals have their way, patients will have access to only some parts of their records, and not all of their records.
The conversations taking place show us that among the doctors, healthcare facilities and others involved in the design of these electronic records, many are lobbying to restrict our access to parts of our records. The parts they don’t want us to see may be billing related, or they may be related to notes the doctor or provider has included in our records.
Why would they want to restrict some access? Because they don’t want us to know what they are saying about us. They may have made a notation that says you are a difficult patient, or a non-compliant patient. Or they may have noted that you should be watched for potential heart disease or diabetes or some other potential problem. That’s, at least, what they tell us publicly.
My sense is a little different, and its based on the experience of e-Patient Dave, my friend Dave DeBronkart, who was able to download his records from the hospital where he received care for his kidney cancer and discovered all kinds of problems with those records. He learned he had been diagnosed with diseases no one ever told him he had. He learned he had gotten tests that he knows he never received. It goes on from there.
So what’s the problem? First — his insurer got BILLED for those extra tests and diagnoses he never really got. Now multiply that times the millions of Americans who might find out that’s in their records, too. Second — now multiply that by the problems that might have occurred had Dave tried to get health insurance somewhere besides through his employer. Because a new insurer would pull up his error-ridden records, he would have been turned down flat. And third — because if Dave tried to go to a new doctor who pulled up those electronic records and saw that Dave “had” all the things he didn’t really “have” — then he might misdiagnose and mis-treat Dave later, too.
It’s important we all have access — and gain access — to our entire health and medical records, check them for accuracy, and correct any problems we may find.
It’s important to our lives — and to our wallets. Learn more about the initiative to make sure patients maintain the rights to their records in their entirety.
From HealthDataRights.org, the Declaration of Health Data Rights:
In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:
• Have the right to their own health data
• Have the right to know the source of each health data element
• Have the right to take possession of a complete copy of our individual
health data, without delay, at minimal or no cost; If data exist in
computable form, they must be made available in that form
• Have the right to share our health data with others as we see fit
Learn more about:
June 4th, 2009 by Trisha Torrey
This story was sent to me by my friend Debi. It’s not a story about the healthcare system, but it most certainly teaches us a lesson that we can apply:
Barbara Walters, of Television’s 20/20, did a story on gender roles in Kabul , Afghanistan several years before the Afghan conflict. She noted that women customarily walked five paces behind their husbands.
She recently returned to Kabul and observed that women still walk behind their husbands.
From Ms. Walters’ vantage point, despite the overthrow of the oppressive Taliban regime, the women walked even further back behind their husbands, and seemed to appear happy to maintain the old custom.
Ms. Walters approached one of the Afghani women and asked, ‘Why do you continue with an old custom that you once tried so desperately to change?’
The woman looked Ms. Walters straight in the eyes, and without hesitation said… ‘Land Mines.’
…………………………………
According to Debi (and the millions who forwarded this before her): The moral of the story is (no matter what language you speak and where you go) is: BEHIND EVERY MAN, THERE’S A SMART WOMAN.
But I actually see it a bit differently (you knew I would!)…
I think instead it teaches us that we can’t simply place judgment, or accept what we are told, or what we see, without looking behind it. Without asking why? or what else don’t we know? or for some sort of explanation.
When something doesn’t seem to make sense, then there is something we don’t know. If you are diagnosed, you need to ask, “How did you arrive at that conclusion? What else can it be?”
When your doctor tells you what treatment you need, you need to ask, “What other possible treatments are there? What do I need to know about how this treatment will affect me?”
To get the healthcare you deserve… NEVER stop asking questions.
May 29th, 2009 by Trisha Torrey
I’ve always admired Oprah. To me she has been the perfect example of the American dream, while retaining her moral compass and behaving ethically. Until recently, she managed to make her billions by keeping the best interests of her audiences at heart. She had my admiration and my respect.
But no more.
Keep in mind, that when I mention ethics and morals, I’m not suggesting she avoided controversy or wasn’t willing to stick her neck out politically. Of course, Oprah has been at times controversial and political.
As she has every right to be! It’s her show / magazine / network / production company / conglomerate! She hasn’t earned her following by being neutral or wishy-washy. Even when I have disagreed with her opinions on some topics, I still believe she has had every right to voice them.
But until recently, when she has taken a stand, she has done so to improve her audience’s knowledge of a topic, or to help them understand why she believes the way she does. Oprah has helped us understand point-of-view, whether or not it’s our own point-of-view.
And until recently, I have admired her ability to bring so many and varied points-of-view to her audiences, without her #1 focus being how she could make money from it. Granted, she invites guests who will maximize the size of the audience, meaning, indirectly, increased income from sponsors, magazine and TV show advertisers, etc.
That’s fair.
What’s wrong is what she has done recently and that is, she has signed a contract with Jenny McCarthy. McCarthy is no longer a once-in-awhile guest. Now she’s one of Oprah’s annointed ones. It marks a shift for Oprah, a shift in the wrong direction.
And now, I am no longer a fan. For the first time, I believe Oprah has traded her media soul to the money-making devil. And that has tainted everything she will do from now on.
In case you don’t know who Jenny McCarthy is, she is a former playboy bunny - come - self-proclaimed expert in autism. McCarthy has a son who she claims to have cured of his autism. She has written books, marched on Washington, and been very vocal, presumably on behalf of families of children with autism.
For the record, I do not claim to know much about autism at all, and for all I know, maybe she HAS cured her son.
What I object to is not McCarthy’s work in autism — rather — her stance that since she believes her son’s autism was caused by vaccines, she now adamantly advises new parents to refuse to have their children vaccinated for childhood diseases. Her son was born in 2002.
Here’s the problem with that:
First — there is no proof that vaccines cause autism. In fact, all the proof is to the contrary. The agent contained in vaccines that some argued may have caused autism was called thimerisol. Thimerisol has not been used in any vaccines since 1999. Yet, the number of children diagnosed with autism is on the rise. Clearly, something else is causing it.
The second problem — that vaccines have been developed strictly to destroy the diseases that destroy lives, but they can’t do their job if they aren’t being used. Think of the millions who were injured or killed by polio before the polio vaccine. Today, the only people getting polio are those who have not been vaccinated. If children are not vaccinated they will risk polio and it’s their parents who, by choosing not to have their children vaccinated, will put their children at risk. That’s true, too, for every other childhood disease.
Read Time Magazine’s interview with McCarthy. And McCarthy’s very classy quote,
“I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f___ing fault that the diseases are coming back. They’re making a product that’s s___.”
(Those are Time Magazine’s bleeps, not mine.)
As one friend put it: Jenny McCarthy is systematically destroying children’s and families’ lives by taking such a dangerous stand. How is that any different from Adolph Hitler?
Jenny McCarthy is not an MD. She has no medical credentials whatsoever. Yet young parents are listening to her because they are desperate to find someone who can help them with their autistic children. If they listen to what she has to say about helping their child recover from autism — great. But to listen to McCarthy’s medical advice about vaccines? That’s foolish.
Now — returning to Oprah. Oprah has had Jenny McCarthy on her show any number of times. That’s a good way to showcase McCarthy’s point of view, especially when it’s contrasted with those who are experts, those who really do know something about autism and vaccines.
But to sign McCarthy on, as she has with Dr. Phil McGraw and Dr. Mehmet Oz? They ARE doctors! What message is that sending to those who can’t discriminate who does and who does not have good information? (And I wonder how Dr. Phil and Mehmet Oz feel about being in the same media camp as McCarthy?)
And won’t it be interesting when McCarthy spouts her medical opinions (opinions, NOT facts) on her show, a parent does not get her child vaccinated, that child and others are debilitated or die from McCarthy’s advice? I wonder if Oprah will be sued along with McCarthy? Afterall, it’s Oprah who has given her the platform.
Oprah — sorry — but you’ve stepped over a line of trust and respect. You made that flip to the darkside, all in the interest of growing your franchise and making money.
You’ve lost this fan, and I suspect, many others.
Update 5/31/09: Apparently Newsweek agrees with me. Oprah has truly stepped over the line.
May 14th, 2009 by Trisha Torrey
.. at least not for you.
Because it works great for me. And has helped me learn as much about patient empowerment issues in the past few months than ever I could have learned in any other way.
Wonder why you can’t gather more followers? Wonder why people unfollow you? Wonder why no one reacts to what you’ve posted?
The answer is actually quite simple, and if you give it a try, you’ll decide Twitter works for you, too.
Here’s the problem: Many people think Twitter is like a bulletin board. They think they are supposed to post information and everyone else will flock to see what they have to say.
But that’s not it. Even though the question at the top of Twitter is, “What are you doing?” you are better off ignoring that and going with this approach instead:
Think of Twitter as an ongoing conversation that you are welcome to drop into or out of at any time. Instead of using it as a billboard, use Twitter to engage with others — THAT’s the real value.
The skills that make Twitter work aren’t about posting. They are about listening, posing questions, asking advice, congratulating, being sympathetic, cracking jokes, being clever …. In effect, the same skills that make you a good friend, are the same skills that make Twitter an incredible resource for you. Sure, you can talk about yourself on occasion. And you should! But mostly you want to be tapping into others’ knowledge, learning and sharing.
Think of it this way: suppose you went to a party or a networking event, and the only thing people ever did was brag. They never asked you about who you are or what you do, or why you are there. They never offered you anything to eat or drink. All they did was talk about themselves. Boring! Self-centered! Pompous! How much time would you want to spend with them?
Not much, of course. So if all you are ever doing on Twitter is telling people what you are doing, if you aren’t engaging in a conversation with them, then you come across as that same boring and pompous person.
So go back to Twitter (or sign up to use it — here is some good advice for getting started with Twitter). Begin responding to people. Even if they aren’t following you, they’ll find your questions. (You can find anything that’s been said to you, even if you don’t follow people, by searching for just your name — no @ sign or even # sign. Just type your twitter ID into the search box and you can see if someone has asked you a question or responded.)
Personally, it drives me crazy when people post but never engage. I have stopped following many who only ever tell me what they are doing, but never seem to be interested in what others have to say.
The conversations can be interesting, or funny, or stimulating… friendly, or abrasive, or professional, or even life saving. I’ve made new friends, I’ve gotten to know others from around the world, and I’ve gathered potentially life saving information for a woman who needed help for her son. An incredible resource.
The bonus is, that the more people who you engage with, the more followers you will have. So when you do have something worthwhile sharing, more people will see it.
So join the conversation! If you follow me, then please say hi — I’ll find you and will respond, I promise, even if I don’t follow you back.
@TrishaTorrey
I look forward to meeting you on Twitter.
PS - once you begin truly engaging… and you really love it… and you can’t get enough of it… don’t fall victim to the opposite problem - Twittiarhhea! Just like the people who talk TOO much at a party, you may be unfollowed because you post too often. Balance is the key.
