According to the abstract,

We found many of these consumers’ beliefs, values, and knowledge to be at odds with what policy makers prescribe as evidence-based health care. Few consumers understood terms such as “medical evidence” or “quality guidelines.” Most believed that more care meant higher-quality, better care. The gaps in knowledge and misconceptions point to serious challenges in engaging consumers in 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.

That’s evidence we all understand.

PS – think this is blown out of proportion? See what real patients have to say.

. . . . . . . . . . . . . . . . . . . .

DISCUSS | TIPS | NEWSLETTER | FACEBOOK | TWITTER

. . . . . . . . . . . . . . . . . . . .

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

. . . . . . . . . . . . . . . . . . . .

Readers of the post took offense, calling me arrogant and ignorant. Among them are people who are truly afraid, people who are allergic, people who feel as if they have done their due diligence and have dismissed vaccines (empowered patients!) — and conspiracy theorists.

I wrote a follow up post, citing highly credible sources for all to see, showing why I believe flu vaccines are so important. The bottom line is that the flu is dangerous — both the H1N1 swine flu and the seasonal flu are killers. Vaccines are the only defense we have today (who knows – maybe we’ll have something better in the future?) And the statistics tell us that we have a 591% better chance of dying from the flu than we do dying from the flu vaccine. You don’t have to be a Las Vegas gambler to understand those odds.

I am actually VERY pleased that so many people have given researched thought and consideration to the question – even the ones who disagree with me.  However — I must say — I’ve had it up to my eyeballs with the flu vaccine conspiracy theorists…. seriously. And if you are one, I say to you — get a life!

Here are the conspiracy theorists’ arguments. They remind me of a saying I heard many years ago — “Just because I’m paranoid doesn’t mean they aren’t out to get me.”  Further – they have violated the first rule of questionable healthcare practices, and that is – Follow the Money.

Here are some of their lines of reasoning, and my comments:

1. Flu vaccine is only produced to make pharmaceutical companies richer. To that I say — don’t be silly. For the cost, personnel and too tiny profits to be made by producing vaccine, pharmaceutical manufacturers would much prefer to put their efforts into producing something that actually makes a worthwhile profit for them.  Included is the manufacturing are symptoms relievers — far FAR more profitable in the long run.  Why would they want to prevent an illness at very little profit at the expense of bigger profits from medicine that could relieve or fix us?

2.  Flu vaccines were developed from African Green Monkeys - and the real intent is to eradicate the population of the earth! This one gets the “give me a break” award on so many counts… First…  if the government wanted to eradicate the entire population of the earth, they could do it FAR more efficiently by using, oh, say  anthrax or dengue fever – or some other killer.  Why would they go to all the trouble to develop something that actually took science?  Why not a shortcut, and something cheap to do it?

3.  And then I have to ask – why would the government (which government anyway?) want to eradicate the world’s population? If the government eradicated the world’s population, then who would be left to govern?  and who would be left to pay taxes to that government?  and who would be in charge anyway?  (because the government is comprised of people who would get sick, too)…. etc etc….

Sorry — but these theories are just plain laughable.  You want a conspiracy?  I think there’s a conspiracy to make me waste my time looking these things up — because I do my due diligence, unlike some of my readers.

Here’s the deal — I understand that not everyone wants to be injected with flu vaccines, and even that some must avoid vaccines because their bodies cannot tolerate them.  However — for the great majority of us (GREAT majority) — flu shots will keep us healthier — and will keep our loved ones and those around us healthier — than not getting flu shots will.

Further — as reasonable people, we need to understand that unless we have a real concern about negative effects of vaccines, we must accept responsibility for passing possibly deadly flu on to others when we don’t get the flu vaccine.  H1N1 or seasonal — they are both killers.  I’m not willing to be responsible for making someone else sick, nor chancing that they could die.  I would not be able to sleep at night.

Do you?

. . . . . . . . . . . . . . . . . . . .

DISCUSS | TIPS | NEWSLETTER | FACEBOOK | TWITTER

. . . . . . . . . . . . . . . . . . . .

There’s so little I can say about swine flu that hasn’t already been said.  And to that point, I’ve already said plenty!

In fact, I’ve said it all on my About.com Guide to Patient Empowerment, so I figure it’s best just to give you a master list of all the articles I’ve written, by topic:

H1N1 Swine Flu 2009 – 2010 Frequently Asked Questions

H1N1 Swine Flu – Plan and Prepare to Get the Swine Flu

Should You Fear Pandemic Swine Flu?

When Is Time to Call the Doctor for a Swine Flu Drug?

Should I Call In Sick or Go to Work

Swine Flu Vaccine FAQs – FAQs About Novel H1N1 Swine Flu Vaccine and Vaccinations

Side Effects and Other Problems Caused by Flu Vaccines

Swine Flu Myths – Facts, Fiction and Fraud about Swine Flu

Is It Time to Throw a Swine Flu Party?

Bogus, Counterfeit or Unapproved H1N1 Swine Flu Products

H1N1 Swine Flu – Review of Pandemic H1N1 Swine Flu Rumors and Theories

Confirm or Debunk H1N1 Pandemic Swine Flu Conspiracy Theories

Swine Flu H1N1 – Swine Flu H1N1 Websites and Resources

And blog posts that link to additional resources:

Can You Buy Swine Flu Vaccine on the Internet?

Why Not Just Assume You WILL Get the H1N1 Swine Flu?

H1N1 Swine Flu – A Heads Up on More Fraud

Just Assume It’s the Swine Flu

How Healthcare Reform Could Prevent the Spread of Swine (or any) Flu

H1N1 Swine Flu Update – Vaccines, Clinical Trials and Elmo, Too

Swine Flu — and the Crooks Lie in Waiting

Green Monkeys and the Swine Flu – Is the World Doomed?

Have I missed sometime you’d like to read about?  Let me know!  blog(at)EPAdvocate.com.

. . . . . . . . . . . . . . . . . . . .

DISCUSS | EMPOWERMENT TIPS | NEWSLETTER | TWITTER

. . . . . . . . . . . . . . . . . . . .

That law is yet another example of how patients are excluded from being allowed to take responsibility for their own healthcare.  Further, it is one more area of healthcare that has, in some ways, become dangerous.  The law exists because someone’s protective wisdom says we patients are either 1. not smart enough to handle the results ourselves or 2. need to be protected from bad news until a doctor can explain the results to us.  Studies have shown that 7% of all test results that reflect bad news that require a treatment are never delivered to patients (pause… and think about that for a moment….)

It is vitally important we cut out the middleman here!

You now have the opportunity to affect a change — by simply letting the Health Data Rights group know you support them.  I received this email today.  I have replied with a resounding YES I SUPPORT YOUR EFFORTS and I hope you’ll do the same.

This email must be sent by Monday, October 19, 2009.

You can send your supporting email to:  action@healthdatarights.org Put “Consensus Letter” in the subject — and make your opinions known.

Change The Rules and Get Your Labs

We are writing to share a timely opportunity to put HealthDataRights into action! On Tuesday, October 20, the Health IT Policy Committee at ONC is holding a hearing regarding CLIA laws and access by consumers to their own test results. We have a unique chance to speak with one, resounding voice that the federal barriers to patient access to test results should be removed. Dr. Phil Marshall of WebMD will be testifying at the hearing, and he will be presenting the linked consensus letter http://www.healthdatarights.org/pdfs/CLIA-Letter.pdf that provides background on the issue, recommends two common sense ways the federal laws can be changed to allow greater access, and the benefits of making those changes. This letter has been vetted by some of the top health data experts and health data privacy lawyers. Here is a summary of the letter and what we’re asking you to do:

ISSUE: Federal regulations under the HIPAA Privacy Rule treat test results as a special case, separate from other protected health information. CMS has issued regulations that further state that results can only be delivered to “Authorized Persons”, which as it is currently defined does not include the patient who is the subject of the test.

PROPOSED CHANGE: We propose simply eliminating the special treatment of test result data, and have it be treated under HIPAA just like other protected health information. We also propose that Authorized Persons explicitly include the patient (upon request by the patient)

BENEFITS: While these changes do not address the state laws in a small number of states that further restrict access to test results, they remove substantial federal barriers to data access. It is unlikely to cause any harm because, under HIPAA, providers and labs generally would have up to 30 days to respond to the patient’s request, providing them great flexibility in how and when they deliver the test results. Also, because so many clinically significant test results (approximately 7%) are never reported to the patient, increased access can help ensure that test results aren’t  lost to the ether . Third, because approximately 14% of labs and other tests are repeated because prior results aren’t available, making test results more available to consumers can help reduce this duplication and related costs. Finally, the explosion in health management applications and services that could make use of test results have the potential to help consumers better manage their health, make more informed health decisions, and help lower costs.

CALL TO ACTION:

STEP 1: Send an email by close of business Monday, October 19, with the following information:

Your name and, if you choose, your organization & your stance on this letter:

-I support the letter and wish to be listed as a co-signer

-I support the letter but do not want to be listed

-I don’t support the letter, and why

STEP 2: Blog about this issue. Include stories, data and stats. Let’s generate some real energy around making this change!  You can also comment on the new healthdatarights blog.

Note the letter can be found here [http://www.healthdatarights.org/pdfs/CLIA-Letter.pdf]

Initial signers:

Dr. Phil Marshall, WebMD
Dr. Daniel Sands, Harvard Medical School
Jamie Heywood, PatientsLikeMe
Dr. David Kibbe, The Kibbe Group, LLC
Nate McLemore, Microsoft
Adam Bosworth, Keas
Dave deBronkart, E-patients
Dr. Roni Zeiger, Google
Colin Evans, Dossia

[email action@healthdatarights.org ] to join.

PS: Forward this to your friends and don’t forget to endorse healthdatarights at http://www.healthdatarights.org/

This email must be sent by Monday, October 19, 2009. You can send your supporting email to:  action@healthdatarights.org Put “Consensus Letter” in the subject — and make your opinions known. It will take you only one minute — vitally important — so please participate.

	Want more tools and commentary for wise patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Follow me on Twitter
	- – - – - – - – - – -
	Join me in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.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

	Want more tools and commentary for wise patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

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?

	Want more tools and commentary for wise patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

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.

	Want more tools and commentary for wise patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

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.

	Want more tools and commentary for wise patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com

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.

	Want more tools and commentary for wise patients? Sign up for Every Patient’s Advocate email tips
	- – - – - – - – - – -
	Join Trisha in the Patient Empowerment Forum at About.com
	- – - – - – - – - – -
	Or link here to empower yourself at EveryPatientsAdvocate.com