When it comes to TV and video, Al Roker provides one of my favorite quotations:
“They say the camera adds 10 pounds. OK. So I figure I must be standing in front of 10 cameras.”
Oh, yes, Al. I know how you feel….
However — I’ve decided to come out of my video-avoidance closet to share the following with you all.
First — my excitement at the invitation a week ago to appear on MSNBC to speak to a problem that I actually cited a few years ago – that July is the worst month of the year to be hospitalized. Why? Watch and see!
So that’s the first one. But if I’m going to jump in to the world of video, I might as well do it with both feet. Many of you know that I am brought in to speak at various conferences and meetings across the US and Canada. I enjoy speaking! So in my attempts to do even more of it, I’m told I need to have a professional video made. So, yes, I finally bit that bullet, too, and have uploaded the online version of the opening here.
It’s not like I’ve never done TV before – I have done local TV on a number of occasions. And broadcast isn’t the problem – ferheavensake, I have hosted a radio show for 4+ years! But video, in general, has just always been a step I’ve avoided.
We found many ofthese consumers’ beliefs, values, and knowledge to beat odds with what policy makers prescribe as evidence-basedhealth care. Few consumers understood terms such as “medicalevidence” or “quality guidelines.” Most believed that more caremeant higher-quality, better care. The gaps in knowledge andmisconceptions point to serious challenges in engaging consumersin evidence-based decision making.
It goes on to explain how they did the study, how they drew their conclusions — and the bottom line is that we patients are making poor and expensive choices, we patients need to begin engaging more in our own care decisions, and therefore, and until we do, we will continue to be at fault for the huge cost of healthcare.
As their next step, Health Affairs developed a communication toolkit. But – just as every other group that tries to analyze patient behavior has done — it was developed FOR patients, to be given TO patients (through their employers) — but nobody worked WITH patients to develop it.
However — the study, the toolkit and the journal report have completely missed the boat on why patients don’t believe evidence. In fact, it has very little to do with evidence at all.
Here’s why:
Because the American healthcare system is based on profits — and the less engaged we patients are in our own decision-making, the more money there is to be made. As long as someone can make money from our need for care, we patients will continue to be manipulated so they can make their money. It’s not about evidence. It IS about maintaining and increasing profit.
Some examples:
1. Providers are not paid to talk to us. In fact, they can’t wait to get us out the door. Their goal is to make as much money they can from us — which is fair — but the system says that they have to do that by seeing as many patients as they can in their day. More patients means less time per patient. That approach, of course, is driven by payers. But how are patients supposed to discuss options with someone who won’t spend time with them?
My perspective as a patient: I have symptoms. I am scared about what they mean. The doctor won’t take the time to explain them or answer my questions. He intimidates me, but he’s still the gatekeeper to all my medical needs, so I don’t dare make him mad. I would love nothing more than to discuss options — but exactly who can I have that discussion with?
2. Providers CAN make money by running tests and doing procedures – so they recommend all the tests and procedures they can get away with. Further, they know that the paper trail of tests and procedures may cover their backsides one day if I ever sue. That approach, of course, is driven by payers.
My perspective as a patient: I have symptoms. I am scared about what they mean. The doctor won’t take the time to explain them or answer my questions. He intimidates me, but he’s still the gatekeeper to all my medical needs, so I don’t dare make him mad. When he tells me I have to have a test or a procedure or take a certain drug, I just nod my head because I’m put on the spot. I don’t know the questions to ask, and even if I did, the doctor has left the room before I can even think to ask them.
3. Providers are rewarded by writing prescriptions for expensive drugs. (And don’t tell me that’s no longer legal because we all know it’s still going on — it’s just more covert.) They are paid to speak at dinners, or they get their CME cruises paid for, etc…. Payers may encourage a prescription for a generic, but even that is no longer as true as it once was. They’ve pretty much thrown in the towel – now they just charge patients a larger co-pay.
My perspective as a patient: I have been diagnosed by the EXPERT — the doctor. He suggests I take a certain drug. When the prescription is written for me, as I sit naked in his office, I have no way of knowing what it’s going to cost me when I pick it up… What I do understand is that a few months ago when I asked about a generic I was told that one didn’t exist for what I need. Even if I ask, I’m afraid the doctor won’t be happy with me, and since it took me two months to get this appointment anyway, I just don’t want to rock the boat.
4. Providers own equipment and facilities. They encourage patients to use that equipment and those facilities. MRIs, surgery centers – you name it, physicians own it — OR — they are employed by the people who own the equipment. Those leases need to be paid!
My perspective as a patient: I just know I banged up my knee and the doctor needs to look at it. He tells me he’s sending me down the hall for an MRI. What am I supposed to do — suggest I get an x-ray be done somewhere else instead? Seriously. Suppose he says no and gets mad? My knee hurts today — I can’t wait another couple of months for an appointment with a different doctor!
etc etc etc
Perhaps by understanding our patient perspective on our interface with the system, you’ll better understand the bottom line to why we don’t make the choices that evidence or money suggests we should.
We don’t TRUST the system. And we are AFRAID NOT TO TRUST our doctors. Doctors are the gatekeepers. They are the front line. They are the ones who help us live and who may cause us to die – and we are intimidated.
Until the system shifts to a place where we can be partners, and feel as if our input will be listened to, considered, and respected, then there will be no massive shift in how patients influence their own care decisions, whether for evidence or money reasons, no matter how many communications toolkits are developed.
My regular readers know that I have never been about a victim mentality. I have spent the last 5+ years writing and speaking to patients about getting past these hurdles. If there is anyone engaged in improving how patients approach their care, I’m at the front of the line.
But I’m also not willing to accept the blame being heaped on us patients as if we are children who haven’t yet done what we’ve been told. You can’t flip a switch, tell us we are wrong, and that we are expected to change, when there is nothing about the healthcare system that will allow for that change.
Bottom line — as long as everyone in the healthcare industry is out to make a buck off our patient backs, there will be no improvement on a grand scale. Period.
I’ll begin this post by saying that I understand the basics — that many parents of children with autism believe that autism was brought on by vaccines. And that scientific research has over and over again proven that link does not exist.
Then I watched the Dateline / Matt Lauer interviews and exposé, A Dose of Controversy, about where that suggestion came from, profiling Andrew Wakefield, the doctor/scientist who first suggested that link existed, and who is now hailed a hero by many of those parents who still believe in the connection. Also interviewed were two more major players in the argument – Brian Deer, a British journalist who has exposed Wakefield over and over again, and Dr. Paul Offit, infectious diseases expert from Children’s Hospital of Philadelphia, who has written a book called Autism’s False Prophets which lambasts Wakefield’s work.
Matt Lauer pulled no punches in his questioning of any of the three. It’s very clear that the worshipping behavior of these parents who believe that somehow Andrew Wakefield represents the second coming is misplaced. But even more than that – it’s very easy to see how we observers must use the follow the money rule on all three of these men. Perhaps an even bigger lesson has to do with LISTENING.
But we also must remember in the midst of this — that many studies (I can’t find a number, but it was suggested there were at least dozens) — studying, literally, MILLIONS of children — have proven every time (not just some, but every time) that an autism-vaccine link DOES NOT EXIST. Even The Lancet, a highly respected medical journal, the one which originally published Andrew Wakefield’s article about that link, has stated that they never would have published it if they had known how Wakefield’s work had been funded (see below.)
Follow the money (FTM) — it’s the rule that helps explain a lot of the “why’s” in healthcare. Here are examples, as applied to the questions about autism:
FTM explains why Andrew Wakefield would continue asserting that the MMR vaccine causes autism — because he is/was paid in at least two ways to make sure that was clear. First, he was paid at least $750,000 by a company that developed a measles-only vaccine that could have been used as a substitute for the MMR. Now, under suspicion for other (unspecified) charges in his native England, he has set up an outpost in Austin, Texas (have to wonder about the wordsmithing there — Austin and Autism) — but is not licensed to practice medicine in the United States. Parents are paying thousands of dollars to have their children tested for certain gastrointestinal problems possibly related to autism, but it was unclear as to whether any children have actually been helped by Wakefield. Further, outside of parents talking about how wonderful he is, none seemed to be able to pinpoint exactly why — except that he listens.
(All other doctors of every stripe — please take heed of that — HE LISTENS.)
Brian Deer – his FTM is a bit easier to track. He is paid to do his investigating and writing, so finding a goldmine like Andrew Wakefield is job security. It should be noted that Deer also needs the money to defend himself legally. He has been sued a number of times by Wakefield — always unsuccessfully — Deer has always prevailed, able to prove that his allegations about Wakefield were accurate and defensible.
Dr. Paul Offit requires some FTM analysis as well. Beyond the income from his book where he alleges that parents have been scammed by Wakefield for more than 10 years, he is full-on supportive of vaccines – including the fact that he is the developer-inventor of one vaccine. So yes, he makes money as the developer of the vaccine, which seems to be unrelated to autism. Interestingly, he has an expense many would not ever think of — he is forced to pay for bodyguards, because some of those Wakefield supporting parents have threatened his life.
Here are some beliefs I hold, which affect my beliefs about this controversy:
I absolutely believe each of these parents who has observed their children well enough to say “She was fine, then she got the vaccine, and something happened.” I don’t question that for a minute, because I do believe parents are THAT WELL tuned in to their children.
I also know human nature well enough to understand why parents cling to any belief that would help them explain something that is otherwise not understandable. As humans, we all want to assign blame. It’s the reason we can’t cope with problems like Hurricane Katrina, or any other mother nature related catastrophe — because there’s really no one to blame. By clinging to the vaccine-as-perpetrator, parents have someone to blame, plus the bonus of a hero in Wakefield. (Plus making Jenny McCarthy a hero — another story for another day.)
When people are desperate, like these parents with autistic children, they will go to extremes, even when those extremes don’t make sense. To so desperately believe in something that has been disproven in so many ways, and to be threatening the life of someone who truly makes sense — these are moves of desperation.
Combining those beliefs, and having done a brief FTM analysis – we have to look at some bigger picture questions, too. I provide no answers here — I’m just sayin’…
So what if Wakefield and all these parents are right? What if the MMR vaccine DOES trigger something that causes autism? Maybe it’s not the vaccine itself — maybe the child happened to have eaten something that day, or has another very mild, asymptomatic virus or bacteria in his body — or ? It could be the vaccine in a combination with something else – I do know a genetic link is being studied, too.
Even if there is a link — how does that change things for the parents whose children do have autism? It doesn’t mean there is a cure. You can’t subtract the vaccine from their bodies. So why would parents put so much energy into their hero-making – at the expense of taking time away from their own children to do it?
Autism is a “spectrum disorder” — is it possible it’s not just one thing? Is it possible that even though the symptoms and some of the behaviors are similar, that these children really have different disorders — triggered by different things? Whose to say that some forms of ADHD, for example, aren’t really a part of that spectrum? I know there are many discussions of misdiagnosis among both autism and ADHD diagnoses….
Finally — I believe the bottom line here is the fact that NONE OF THESE PROFESSIONALS get the fact that the passion and desperation fuel this fire and that the people who feel the most maligned (the parents who believe in Wakefield) do so because they feel that he LISTENS.
And that is the bottom line for today’s very long-winded post. We all need to listen more because listening, then responding appropriately, will lend itself to compromise and understanding — no matter what the controversy.
I’m listening — what can you tell me that will help explain what I don’t understand?
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.
“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.
The journal Health Affairs reports on a study that finds 
I’ll begin this post by saying that I understand the basics — that many parents of children with autism believe that autism was brought on by vaccines. And that scientific research has over and over again proven that link does not exist.
