“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!

Visit msnbc.com for breaking news, world news, and news about the economy

(Even got my two cents in about hiring patient advocates!)

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.

Until today.  So, OK, I feel better now.  [[gulp]]

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In the five years I’ve been working on patient empowerment and patient advocacy, I’ve been thrilled to have been quoted in the likes of the Wall Street Journal, US News & World Report, Forbes, Fox, NPR, PBS and others…

But now I know I have arrived — because O Magazine came calling!  Sure enough — an article called Someone on Your Side – it’s about hiring a patient advocate to help you through a medical problem. Because I am the founder of AdvoConnection and work extensively with private patient advocates, I am one of the people quoted in the article.

I join three of my distinguished (and very talented!) colleagues.  Hari Khalsa is the Health Whisperer.  One of her patient-clients who was being treated for thyroid cancer just could not get her doctors to coordinate her care.  Hari stepped in to make sure the care was coordinated and Tracy, the patient, got what she needed.

Gail Gazelle is cited in the article, too.  Gail owns a private advocacy business called MDCanHelp.  Gail points out that too often doctors just don’t have the time to devote to care coordination as they should.  Private patient advocates step in to fill the gap.

And Ken Schueler, who has been coordinating care for cancer patients for many years, is quoted, too.  Ken provides some advice for finding good health information online about diseases, clinical trials and more.

The most important information for you?  When you read the article, you’ll realize how important it is you find an advocate to help you.  Although the Patient Advocate Foundation might work for you if you can’t afford an advocate (they handle insurance and  claims issues) — if you need care coordination and help with your medical decisions, then you must give serious consideration to hiring a private patient advocate.

So how do you find these people?  Simple:  a directory of advocates who have been reviewed for their expertise, and work closely with patients like you everyday:  www.AdvoConnection.com.

Private patient advocates provide you with improved health outcomes AND peace of mind.

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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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One of the things that has been keeping me busiest (as you can imagine) is talks about my book, book signings and interviews. It’s been fun so far! So I thought I’d share some links to videos, podcasts and more.

• I had fun talking to Dave Bullard from our local NPR station, WRVO about You Bet Your Life! You can listen to the podcast here. You’re welcome to listen to the entire conversation!  But if you want to hear just the section about You Bet Your Life, then you’ll find it begins right at 33 minutes and runs a total of 5 minutes.

• My chat with Kathleen Slattery-Moschkau for her syndicated weekend radio show was a blast, too!  We were able to cover quite a bit more ground than my conversation with Dave — I thank Kathleen for her enthusiasm about You Bet Your Life! Please do listen to this podcast because it will give you quite a bit of perspective about why you must take control of your own healthcare.

Great fun at book signings, too:

• At Creekside Books in Skaneateles, NY – great questions from the audience and many thanks to both the owner, Erika Davis and Laura Ponticello from Laura’s List of Books for Women.  They made my book launch just perfect!

• A big thanks to Marie Kulikowsky from Barnes & Noble in Dewitt, NY for handling what will be two book signings!  Yes — in an example of some of the most marvelous timing, the Syracuse Orange NCAA basketball game was scheduled for the exact hour as my book signing (hey!  I got there first!)  I emailed those on my list and told them we would reschedule the basketball game.  Afterall, I have a pretty good sense of what my friends’ priorities are — however — about two dozen people showed up anyway – including friends Leslie Rose McDonald and Cindy Masingill — here are the three of us:

….. and yes…. we have rescheduled for May 6th, 7 PM at Barnes & Nobel, Dewitt.

• Thoroughly enjoyed meeting so many people and answering so many great questions at the University of South Florida / Sarasota Lifelong Learning, too.  Truly engaged emPatients — a real pleasure.

• Finally — but certainly not least! — is a great article written by Amber Smith of the Syracuse Post Standard (yes, my disclaimer, Amber is my editor) — accompanied by a video, too!  Link to the article — or to the video below:

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So at least you know I haven’t been snoozing…. I do want to sell books, but honestly, I’m making next to nothing on those books. More than that, I want you to be an emPatient, too… it’s important. Especially knowing the road healthcare reform will take us down.

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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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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?

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Labor!  ay!  Let me tell you about my labor!  The gestation period has taken years (please, no elephant jokes!) — but the baby was worth waiting for.

You Bet Your Life!
The 10 Mistakes Every Patient Makes
(How to Fix Them to Get the Health Care You Deserve)

I’m quite proud of it, really.  And I’d love to know what you think of it, too.

Even after all that time, it was a bit premature — meaning — it won’t be available in bookstores for another several weeks — the actual publication date isn’t until February 1, 2010.

But!

It IS available for sale at the book’s website — and between now and December 31, 2009, at special pricing.  Not only is the book price reduced (only $12.95 — retail cost is $16.95) — but shipping is only $1 per book in the US. (A bit higher outside the US.)

I’ve been asked if it contains the same information you find on my other websites and the answer is yes and no.  In fact, some of the basic information is the same — yes — but I’m told by those who have already read it that it’s far more comprehensive, and that since it is found in a chronology of ideas, it’s far more useful.

Please take my baby home!  Then let me know what you think.  And thanks to the many people who have already supplied good words….  It’s time for YOU to take control of your health care now, too!

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But I also rejoice!  Because more than a decade of Alzheimer’s disease had ravaged her brain, and her body, and she was not Mom for many, too many years.  She is now free of that prison.

I wish you could have known my mother.  Intelligent and funny, caring, talented and clever, she brightened a room when she walked through its door.  She had a beautiful singing voice which graced school auditoriums and church sanctuaries, and a mean golf swing which found its way through more than two dozen countries across the globe, and resulted in three holes-in-one!  She loved the Buffalo Bills, the Buffalo Sabres, and Syracuse University sports.  She was a master calligrapher and could cross-stitch her way to the moon and back.

All that and more.

The “more” came in the form of being a loving and supportive partner to my dad and, from my own perspective, a great mom and grandmother, too.  The life lessons she shared were the basics — cooking, cleaning, etc.  But more than that, my sisters and I learned concepts that have stood the test of time and have made us better people.

So my tribute — this post — will be about sharing two of those life lessons with you, so you can understand better what I mean.

Mom was a fantastic and creative seamstress.  Each Halloween she would put together the most glorious costumes for my sisters and me — and sometimes for herself and Dad, too.  When Mom was pregnant, she made herself a kangaroo costume. In second grade, I was a Christmas tree.  A couple years later, I was the organ grinder and my younger sister, Barb, was the monkey.  Seriously.

Fast forward 25 years, I would do my best to sew fabulous costumes for my daughter, Becca, too, beginning when she was only a year old.  But when Becca was in second grade, all she wanted was a $5 costume from Kmart!  All I could think was, what kind of a lousy mother would just spring the $5 for a cookie cutter costume from Kmart?  It was a conundrum, for sure.

So I shared that conundrum with Mom, in hopes she would understand the dilemma.  But she didn’t understand it at all — because to her way of thinking, the point was to make Becca happy.  And if Becca was happy with a Kmart costume, then so be it.

In other words — the outcome was far more important than the process.  A good lesson.

Many years later, and up until about 2001, Mom and I played golf in the mother-daughter golf tournament each summer. This particular golf tournament was an annual event which was won by the same 2-3 mother daughter pairs each year — because they were all good, competitive golfers.

I’m not that golfer.  I play against my own previous scores, but don’t really care about beating someone else.  I’m more about the fun, the fellowship, and enjoying a beautiful day.

However, undaunted, Mom and I would play our best.  If you won the tournament, there were some very nice prizes to be had.  And, if you won the tournament, you were put in charge of the tournament the following year.

So each year, before we teed off on the first hole, Mom would remind me that our goal was to come in… second.

The lesson?  That sometimes you win bigger by not being first.

It’s not easy losing a parent.  I’ve been learning that for many years through the fog of Alzheimer’s, and I’m learning even more about it now.  We’re fortunate that Dad is still with us – as sharp and vital as ever.

We’re at peace with losing Mom, even through our mourning.  Over time, I’m sure that the sadness and frustrations wreaked by Alzheimer’s will be fully replaced and obscured by the happier memories of her first 75 years.

I hope you and those you love will never have to suffer “the long good-bye” of Alzheimer’s Disease.

Rest in peace Mom.  I will always love you.

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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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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.

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