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.

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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.

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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.

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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

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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.

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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.

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I say – we have not overreacted – but I worry about Chicken Little.

The initial reports from Mexico indicated real potential for problems.  Governments, WHO and the media were in a d*mned if they do and d*mned if they don’t position:  Had they NOT reacted, then I guarantee you, the flu would have spread faster, further and more people would have died.  Then they would have taken the hit for not reacting appropriately– like George Bush deservedly did for Katrina — and we would all be left behind cleaning up behind the mess.

So I believe the reaction and the hype, and the reminders about the impact seasonal flu has on all of us, are warranted. I, for one, appreciate it.  Lives have been saved.  Awareness has been heightened.

That said…

I actually have more concern about the next time around. Whatever virus mutates, whether it be bird flu, swine flu, or hippopotamus flu — no matter which one it is — will we all be (pardon the pun) immune to the hype?  Will we ignore the governments and media who try to prepare us to keep us safe?  Will we go about our daily business tuning them out?  Will we turn a deaf ear because “remember swine flu?  no big deal!”

Chicken Little (who may be carrying bird flu, by the way) reminded us that the sky CAN fall when we don’t pay attention.  So the real point is that we need to be prepared with falling-sky contingency plans.  That’s what WHO does.  That’s what governments do.  That’s what media reports.

We just need to be sure we pay attention and take action, regardless of how hype-y it seems to be.

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It didn’t take long for the conspiracy theorists and the rumor mills to get going over swine flu, did it?

Let’s see:  do Madonna or Salma Hayak already have swine flu?

Or – is this possible pandemic really just bioterrorism?

These and more swine flu myths, separating fact from fiction and some fraud thrown in, too… check them out!

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Note:  Swine Flu FAQs updated daily

Plus:  Should We Be Afraid of Swine Flu?

While the professionals provide us with statistics about Mexico, Texas, California or other places where patients have contracted swine flu, I actually find I have different questions all together:

• I don’t live in Mexico. Am I at risk for getting swine flu?
• Will my seasonal flu shot protect me?
• I’ve never met a pig in person and don’t expect I’ll meet one anytime soon. Should I be worried about getting flu from a pig?
• And what about my favorite Sunday breakfast – bacon and eggs?

So I went in search of the answers, believing that if I have those questions, you might too.  So I put them together in an article along with their answers: Swine Flu FAQs

And as for breakfast?  Very crispy please.

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Colleague and fellow passionate advocate Bart Windrum got (as my mother would say) his blood in a bubble after reading an article about engaging a patient advocate to help you navigate your healthcare, recently published in a Tampa newspaper.

In a list of tips about how to advocate for someone else, one tip said, “In hospitals ask, in a friendly way, that every pill, every injection, ….”

Bart thinks that’s ridiculous. He believes “friendly” comes across as “Beg. Acquiesce. Place yourself beneath again, some more.”

Bart is an author of  Notes from the Waiting Room. He knows what he is talking about.  Bart suggests we be business-like.  I agree.

Business-like may be a term lost on some who don’t operate in a business environment.  So I call it commanding respect.  To gain respect, which is so necessary in any medical setting, you must command it. You earn it by your actions and approach.

(Please note — that does not say “demand respect” — I believe that is impossible in any medical setting unless the other person fears you — another post for another day.)

How will you command that respect?  By being diplomatic and concise.  Start with polite. Let them know you have specific expectations and want accurate information. Earn / command the respect of those who can get you what you (your patient) needs.  If you don’t get the information or action you need in a fair amount of time (some actions require seconds or minutes, others can wait a half hour) then become assertive.  Never, ever become aggressive unless it is life and death and you are being ignored.

Here’s an example I got from Charles Inlander, a gentleman who was advocating for patients before most realized they needed it.  He was in the hospital, and needed a nurse’s help in the middle of the night.  He pushed the call button a number of times and got no response. (Does THAT sound familiar!) So finally he picked up the hospital phone, dialed “O” to get the operator, asked for the nurses’ station on his floor, told the person who answered what need needed, and seconds later the nurse showed up in his room.  (I love these kinds of ideas!)

What’s your experience?   Have you advocated for a loved one in a hospital?  Did “friendly” work when you actually needed something? Or did you find yourself having to be more definite and concise?

Did you command respect?

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