Archive for the 'Patient Safety' Category
February 6th, 2010 by Trisha Torrey
While Congress continues its monkey shines, American patients are continuing to get substandard, too-expensive healthcare, or no healthcare at all. We are getting sicker, and dying, because we can’t get decent care.
However, if you think this post is going to be a call to action for Congress – think again. While I am a firm believer in healthcare reform, and while I firmly believe we Americans deserve universal care – I also know that if you are already sick, or if you get sick today or tomorrow, or even next year, then healthcare reform isn’t going to help you anyway.
The one BIG benefit to all this healthcare legislative brouhaha, no matter what the outcome so far, is that it has forced us patients to realize that Marcus Welby has left the building. The paternalistic, omnipotent doctor-as-God who actually cared about our medical outcomes has become an endangered species — one most of us will never meet in our lifetimes. Healthcare reform discussions have made this very clear: American healthcare is not about health or care. It’s about sickness and money.
So what have we learned?
That in order to get the good, decent care we patients deserve, we’re going to have to take matters into our own hands. Yes — US. WE PATIENTS are going to have to do it for ourselves. We need to be EMPATIENTS (empowered patients.) It’s a shift in mindset that those among us who are smarter and more attentive are realizing isn’t a choice. If we want decent medical care in the United States (or, it seems, in most countries of the world) — we must make this shift in our thinking.
I hear people poo-pooing the use of the term “empowered.” They don’t like it because to them, it suggests that someone must GIVE us power.
I don’t see it that way. I see “empowered” as something we take on ourselves. We take command of our care. We take responsibility for acquiring the information we need, then making decisions for ourselves. We do that with a variety of resources, including physicians, other patients, and media information sources like the Internet, libaries and others.
If you think about it — that’s an entirely different way of accessing healthcare than most of us are used to. It says that, in effect, we will no longer allow healthcare to be done TO us or FOR us. Instead we will demand it be done WITH us.
That means it’s a whole new type of healthcare reform.
In fact, it’s PATIENT REFORM.
Are you ready to take up that cause for yourself and your loved ones? There’s no argument over money here… it’s simply a recognition that if we are going to get the health and medical care we want and deserve, we are going to have to make it happen ourselves. It’s an approach to getting the right diagnosis, the right treatment, staying safe, and making sure you don’t lose your health because you can’t afford to access care. It’s collaborative, research based, and helps us advocate for ourselves.
Here are some places to begin:
• What’s an Empowered Patient? (or anything at the About.com Patient Empowerment site.)
• You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Health Care You Deserve)
• E-Patients.net (e-patients and emPatients describe the same thing – e-patients does not mean you need to understand electronic media.)
• The Society for Participatory Medicine
These resources link to the dozens of other resources you’ll need, too.
Yes — this is it. The beginnings of PATIENT REFORM. Let those in Congress, the ones who have cadillac healthcare plans and don’t really understand what the rest of us deal with continue their bickering and corporate *ss-covering. Let them continue to kow-tow to special interests who are more about making sure they keep their corners of the healthcare money pie, with little or no regard for patient outcomes.
I declare 2010 to be the Year of the EmPatient! Empowered, participatory — finding far better outcomes than we ever could by depending on Congress or someone else to — maybe — help us out.
. . . . . . . . . . . . . . . . . . . .
DISCUSS | TIPS | NEWSLETTER | FACEBOOK | TWITTER
. . . . . . . . . . . . . . . . . . . .
September 18th, 2009 by Trisha Torrey
Update on this post: AdvoConnection is launched! Patients are being helped, and patient advocates are ready to help you. Learn more at: www.AdvoConnection.com.
………………………………………
Hard at work we’ve been! And AdvoConnection, a dream of mine for several years, is getting ready to launch.
Since beginning my advocacy work almost five years ago, and being highly visible on the web, I hear from desperate patients on an almost daily basis:
- They cannot get an accurate diagnosis, know they need treatment, and need someone to help them find the doctors, or get the tests, that can help them.
- They are seeing too many specialists who aren’t coordinating their care. They need someone who will take a look at their reams of medical records to help them sort out their treatment.
- They are having trouble with their insurer, who isn’t paying as promised, or who is denying them care.
- They have received doctor or hospital bills that they can’t sort out or decipher. Or they believe they have been billed for services they did not receive. They’ve read that up to 80% of hospital bills are incorrect, and they want someone to help them negotiate with whomever has billed them.
- I hear frequently from adult children of elderly parents, perhaps living in a different location, who need assistance for their parents, either to help them find a nursing home, or for eldercare or home health care.
- The biggest heartbreakers are the parents who have run into brick walls trying to help their children. Or the left-behind person who lost a loved one to a medical error. They need to know who to turn to — an advocate? a lawyer? to get the support they need.
Now you can see why I wanted to develop AdvoConnection. It is a service for matching patients to the help they need in the form of patient advocates, patient navigators, billing assistance and other forms of medical system assistance that will help them navigate the waters of our dysfunctional health care system.
There are two aspects to this new site and service:
AdvoConnection for Patients – www. AdvoConnection.com – will launch October 1. Patients will be able to search for an advocate or navigator by location and service provided — at no cost to them. They will have the information they need to contact that advocate to inquire more about their services. It’s a directory type service that will help patients and caregivers find the help they need.
Any patient or caregiver who thinks s/he might need patient advocacy assistance can be added to the email list to be alerted when the site goes live (or, if you read this after October 1, 2009, go directly to the site itself.)
AdvoConnection for Advocates – http://members.AdvoConnection.com – provides advocates and navigators will the interface to be a part of the directory for patients described above. It also provides additional business services such as marketing assistance, and a forum for connecting with other advocates. By early 2010, it will also provide them with access to an ask-a-doctor service, and other services they may seek to help them grow their advocacy businesses.
Any patient advocate interested in participating with AdvoConnection may apply for membership through that site: http://members.AdvoConnection.com
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.
