Archive for Patient Safety

Don’t Let Your Medical Test Results Fall Through the Cracks

(as published in the Syracuse Post Standard August 30, 2011)

A few years ago, I changed primary care doctors.

The one I left had good credentials. Over the span of a few years and several visits, she had seemed competent and was friendly.

But on my final visit, there had been a change that caused me to leave her practice. It came in the form of a sign which hung on the walls in all of her exam rooms.  It said, “Please do not phone us for your test results. We will call you if there is a problem.”

I was stunned; although I knew immediately why she imposed that policy.  It costs time and money to phone all those patients, make copies and mail them.  She decided the expense wasn’t worth the failsafe. As her patient, I found that to be dangerous and unacceptable.

A study published in 2008 illustrates why this is a problem. It focused on mistakes made during the ordering, administering and reporting processes of primary medical care tests.  The report showed that seven percent of results that went unreported to the patient resulted in additional problems for that patient including delays in treatment, further pain and suffering, and more out-of-pocket expense.

Evidently my former primary care doctor finds it acceptable to intentionally drop the ball on care for seven percent of her patients.  Those weren’t odds I was willing to accept.

Few of us visit our doctors anymore, primary care or specialists, without being tested for something.  Blood work, urine tests, a CT, MRI or any other test…. No matter whether the results are perfectly normal, or identify a problem, we need to know where we stand and what to change, if necessary.  Their results are always important, and we patients must always know what they are.

When you are given any sort of medical test, ask how and when the results will be reported to you.  Don’t accept a “don’t call us” reply.  When they phone you with results, ask for a follow-up copy by email or postal mail.  If you don’t hear back when they say you will, call the office of the doctor who ordered the test and bug them until they come through.

Doctors’ practices are becoming busier than ever. It’s easy for test reporting efforts to drop through the cracks.  Don’t let your test results be among them.


How to Get your Medical Test Results

How Primary Care Doctors are Dropping the Ball on Medical Tests

How to Get your Medical Records

How to Correct Your Medical Records If There Are Mistakes


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Posted in: Doctor Communication, Health /Medical Consumerism, Healthcare Quality, Medical and Research Studies, Medical Errors / Mistakes / Misdiagnosis, Medical Records, Patient Empowerment, Patient Safety, Patient Tools, Self Help

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Informed Consent Requires Clarity – Do You Have It?

(as published in the Syracuse Post Standard August 16, 2011)

Recently I was chosen to participate in a new writing project. There were some basic details and responsibilities I was expected to agree to, including a specific number of articles, average number of words, and some other typical expectations.

I was given a contract to sign. After a careful reading, there were some strange differences from others I had signed in the past. I found some hedge words in the contract which could mean I would do all the work, but they could decide not to pay me, yet still have the rights to use my work. Red flags!

I didn’t jump to conclusions. Instead I asked questions. “Will you explain what this means?” “Will you give me an example of how this might work?” Eventually we clarified the fuzzy wording, worked out the terms, and I signed the contract.

But – and this is important – I didn’t sign it without making a few alterations to the descriptions. Each party initialed those changes, then signed the contracts.

So why should you, my reader, care about my writing contract?

Because every time you need certain medical tests, any medical procedure and many treatments, you are asked to sign a contract, too. It’s called “Informed Consent.” By law, those services cannot be performed unless your signature is obtained ahead of time on an Informed Consent document. That consent provides legal protection to both you and the person who performs the service.

The real question before you sign is, have you been thoroughly informed? Do you understand the risks, benefits and alternatives to whatever service is about to be performed? Do you know exactly who will perform it? Have they managed your expectations?

Sometimes Informed Consent documents will have hedge words or statements in them, like my contract did. For example, “to be performed by Dr. Serg Ury or his representatives” may mean your surgery will be performed by someone you don’t expect. Just who are his representatives? They might be his partners, or they might be students. If it is important to you, then clarify, and change the wording if necessary.

Wise patients never sign an Informed Consent document until they are very clear on what is about to happen, who will be making it happen, and what the risks, benefits and alternatives are.

Clarity will provide confidence that you understand what is about to happen, and that you’ve made the right choices for you.


Understand Informed Consent

Trauma from Violations of Informed Consent

Patients’ Rights in the United States

How to Prevent Surgery Mistakes on the Day of Surgery


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Every Patient’s Advocate Patient Empowerment

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Patient Empowerment Tips

Posted in: Doctor Communication, Health /Medical Consumerism, Healthcare Quality, Hospitals, Patient Advocacy, Patient Empowerment, Patient Safety, Patient Tools, Surgery

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Is It Safe to Purchase Prescription Drugs Online?

(as published in the Syracuse Post Standard, June 7, 2011)

One question I’m asked frequently is whether it’s safe to purchase prescription drugs on the Internet.

Whether you like the convenience or hope to save money by purchasing online, the short answer is “Sure! Go for it!” But that’s followed by some cautionary advice, too.

If you have prescription coverage through your insurer or Medicare, then consider purchasing your prescription drugs online from a pharmacy that works with your insurance. Most of the major pharmacies like Rite-Aid, CVS, or Walgreens have websites where you can, at least, refill a prescription.

Most larger payers also work with mail order pharmacies like Express Scripts, Caremark or Medco.  Each of these companies offers a convenient way to fill or refill your prescriptions on their websites. Some even send refill reminders to your doctor.

Saving money is a big reason to shop for prescription drugs online.  If you don’t have prescription drug coverage, or if you are at risk of falling into Medicare’s donut hole, you’ll want to keep your cost as low as possible.

There are several websites available to help you compare drug prices and it’s definitely worth your effort to do so.  For example, the cost for Lipitor 20 mg finds a range of $85.70 to $284.16 for a 90-day supply.  That can save you $1,200 per year! Find that list of cost comparison websites here:  How to Compare Drug Prices Online.

The biggest cautions are safety-related.  You’ll want to protect your identity, since you’ll need to use your credit card. You’ll also need confidence that the drugs you receive are the actual drugs you ordered and not watered down or counterfeit versions.

The best way to be sure you are purchasing drugs safely is to be sure the online pharmacy you choose has been reviewed by the National Association of Boards of Pharmacy. Once they review an Internet pharmacy, it is assigned to one of two lists: either its list of “rogue” pharmacies, those known to be unsafe, or “VIPPS” pharmacies, meaning Verified Internet Pharmacy Practice Sites – the safe sites.

Purchasing your prescription drugs online can be a time saver, a money saver, and is especially helpful for those who have trouble with transportation.  As long as you make sure you’re purchasing from a bona fide safe pharmacy, then it’s a smart approach to purchasing your drugs.


How to Safely and Legally Buy Drugs from Online Pharmacies

How to Buy Drugs from Foreign Pharmacies

How to Compare Drug Prices Online


Want More Patient Empowerment?
Find Hundreds of Articles at:

Every Patient’s Advocate Patient Empowerment

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Patient Empowerment Tips


Posted in: Follow the Money, Health /Medical Consumerism, Patient Empowerment, Patient Safety, Patient Tools, Pharmaceutical Drugs, Privacy and Security, Self Help

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Where’ve You Been Trisha?

Wish I had a nickel for each of the emails I’ve received from people who have followed this blog of mine…. Where have I been?  It’s a fair question.  It’s been months since I’ve blogged here… because, well, I’ve been doing my Willie Nelson thang… on the road again….

See all those stars on the map?  That’s where I’ve been.

(OK – I didn’t abandon my blogging completely.  I still blog at several times each week, and I blog for patient advocates at the AdvoConnection blog, too…. )

But now I’m finally home to stay for a few weeks and can share with you some of the marvelous places I have visited, and more importantly, the wonderful, dedicated people I have met and learned from!

So many different audiences, so many interests in how patients access, perceive, are helped, and hurt.  From seniors, to medical students, to patient advocates, to providers, to employers, to pharma marketers, to patient activists – 14 different presentations, each one different, and each an opportunity to learn – from those who hoped to learn from me.

Here are a few audience highlights:

Patients:  I love patient audiences.  They have already figured out that they need tools to get better healthcare, so they don’t come to hear me speak unless they are already invested in the information.  They infuse themselves into the conversation – often agreeing with what I have to say, and sometimes disagreeing, too (which is how I learn from them what their hurdles are).  I had several opportunities to speak to groups of patients, on a variety of topics ranging from defensive medicine, to how to stay safe in the hospital, to how healthcare reform will affect us all. I had the privilege of speaking to, and meeting new patient audiences in Syracuse and Liverpool, New York, Sarasota, Florida and San Diego (through a program with Consumer’s Union).

Medical students: I had two opportunities to spend time with health professions students – one of my most important audiences.  If we can get our messages out to these young people while they are in the midst of learning their new skills, we have a better chance of improving our patient experiences.  From the 1 Health Program at the University of Minnesota, which includes not just future doctors, but future nurses, allied health professionals and veterinarians, to the Personalized Medicine 101 course at Upstate Medical – it was a real treat to swap thoughts and ideas with these eager-to-learn young adults.  My thanks to Sue Kostka, RN and Dr. Judith Buchanan at the University of Minnesota, and Dr. Robert West at Upstate for believing in my ability to add to their students’ educations.

Employers:  My first opportunity to share patient empowerment with employers took place in New York City in October.  My point to them was that empowering their employees can improve employee health, confidence, and everyone’s bottom line.  I will be frank that I was disappointed in how the message was received – or wasn’t.  To me it is so obvious.  But I don’t believe I did a good enough job making the case.  Back to that employee drawing board which I realize requires more data – data that isn’t yet easily available, as near as I can tell.

Patient Activists:  Do you like that term?  My most recent adventure — some time in Orlando at the Institute of Healthcare Improvement’s Annual Forum.  The IHI provided scholarships – all expenses paid — to 50 of us who are involved in patient safety initiatives.  An incredible opportunity to meet some of the folks I have been in touch with for years, but have never met.  One of my patient advocate colleagues, Ken Farbstein, suggested it was like going to your class reunion, only this time we were the cool kids.  I’ve written more about this almost overwhelming experience.  We patient activists cannot thank the IHI, in particular CEO Maureen Bisognano and Paul Levy, enough for their recognition of the importance of our work, or their generosity in providing the means to bring us together.

Patients’ Advocates:  OK – I’ll admit it.  Patient advocates are my favorite audience.  I had two opportunities to meet new advocates and talk about this quickly emerging field.  As the proprietor of AdvoConnection for patients and AdvoConnection for advocates, I have a lot to say!  In an ongoing relationship with Michelle Gilmore of Heartwood Health, who holds numerous workshops during the year in Oakland, California plus the NAHAC Conference in Washington, DC where more than 100 advocates convened, it was an incredibly exhilarating experience to be in the presence of these patient advocates and navigators who are dedicated to improving healthcare for individuals, one-on-one.

As you can see, I’ve enjoyed an incredible few months.  As you will experience in the future – I have learned so much more than I imparted during those talks and presentations!

I can’t wait to share what I’ve learned with you over the next weeks and months, in hopes of improving your healthcare experiences, too.

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PS – If you are looking for a health topic speaker for your event, please take a look at my credentials, then give me a call.

Posted in: AdvoConnection, Health /Medical Consumerism, Medical Errors / Mistakes / Misdiagnosis, Patient Advocacy, Patient Empowerment, Patient Safety, Self Help

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“Give Us Our Damned Data” Causes the First Meltdown in Awhile

Regina Holliday and Dr. Ted Eytan

Photo compliments of R2DC on Flickr

Regina Holliday’s husband, Fred, age 39, died of cancer in June 2009 leaving his wife, and his two young, beautiful children behind.  During their journey through the healthcare system to try to get Fred the help he needed, too many hurdles were put in their way.  Their story makes you want to scream.

Among the horrors of their journey was the fact that Fred was transferred from one hospital to another – without his medical records. With no records, Fred could not be treated. Regina attempted to get the records transferred, including returning to the first hospital to try to transport them herself.  Instead she was repeatedly stonewalled. Ultimately she was told that she could return to pick up the records in 21 days, and it would cost her 73 cents per page.

None of us can imagine how devastating and frustrating that must have been for her. Fred suffered physically, Regina suffered emotionally.  But today that devastation has become her passion and her mission in life.

Regina is not so much a fighter as she is an artist.  Don’t get me wrong – the girl can fight!  But she fights with the tools only she knows how to use to make her important points.  Those tools are canvas, brushes and paint – and talent that just doesn’t quit.

Even before Fred passed away, Regina began her fight by painting a series of murals on the sides of buildings in and around the Washington, DC area, where she lives.  Her first mural was called 73 Cents.  It’s located at 5001 Connecticut Ave. in Washington, DC.  It depicts some of the many horrible outcomes and experiences she and Fred went through to try to get those medical records.

Since then she has painted other murals, and other paintings – enough to do a showing last week, sponsored (supported by) Clinovations, a company known to us in the empowerment business, but perhaps less known to you.  Clinovations is working to change American healthcare.  They “get” what Regina’s work is all about.

OK.  So here’s where I begin to fall apart.  Please bear with me….

The largest painting is called Give Us Our Damned Data. It features 19 authors (and yes, I’m included — center to the right). All of us have suffered at the hands of the healthcare system, and all of us have written books about our experiences in hopes of improving the system for others.  Here’s a thumbnail version.  You can see a larger version here.

Give Us Our Damned Data!

Photo compliments of Cindy Throop on Flickr

You may recognize a face or two. Each of us is holding a tablet with portions of our book covers.  Each of these folks (Regina lists them all here) is a colleague of mine. Many I have met in person. We support each other, care about each other, stay in touch with each other. We are members of a fraternity that none of us would wish to share with our worst enemies. But we feel so lucky to have each other.

I shed four reasons worth of tears:

1.  I am so proud of my friend Regina for working so hard and sharing her sorrow in such a meaningful way.  I know it’s been a catharsis for her, and I know many others will NOT suffer because Fred, Regina and their children did.  I’m proud to be her friend, and at being included in her wonderful, poignant painting.

2.  I cry for each of the people in the painting.  Each of them has lost someone, or almost lost someone to a heinous mistake, impaled by a healthcare system that is supposed to fix and heal.  Each book is a catharsis, and each author hopes to spare someone else – maybe you – the pain of the loss of health, well-being, trust, and perhaps a loved one, too.

3.  Some tears are post-traumatic stress.  Each time I think about Regina and Fred’s story, mine comes rushing back, too.  Even though I share my story frequently, recounting the facts isn’t the same as facing the emotions.  The fear, helplessness, frustrations – when I first looked at Regina’s painting, I just fell apart.  It’s been a year since the last PTSD meltdown.  But there have been four more episodes in the past 30 hours. I keep thinking it’s getting easier… but… now I’m not so sure.

4.  My fourth reason — strangely enough — is relief.  As I carefully studied each of the paintings in the collection, I was hit with a truth that is so fundamental to all of this.  MY story is the polar opposite of Regina and Fred’s.  They could not get Fred’s records. I GOT MINE!  And that’s the point… !  If I had not gotten mine, then I would never have figured out I didn’t have cancer.  I would have been treated for a disease I did not have.  I would have been debilitated by chemo for no reason. At the end of my chemo, I would have been declared cured of an incurable cancer. But none of that happened BECAUSE I GOT MY RECORDS!

I’m healthy, and happy, and my life has never been better.  And my great revelation is that I am all those things because I was able to get copies of my medical records.  No one stood in my way or refused me copies or tried to charge me for them.  Along with my friend E-patient Dave DeBronkart – we are the poster children for the absolute GOOD that comes from sharing records with patients.

Over the next several years, you will hear discussions about whether patients should be able to access their medical records through the internet, or get copies much more easily than they do today (which, as you can see, isn’t always easy)… please remember this story.  Remember Regina and Fred.  Remember Dave DeBronkart’s and my good outcomes. It’s called meaningful use.  And it’s important.

And then fight your good fight to be sure we can always get those records.  They may save your life, too.

Interested in learning more about Regina’s work?

•  Here is Regina’s blog.

•  Here are Cindy Throop’s photos of the evening’s festivities.

•  Here is Dr. Ted Eytan’s discussion of the showing, including several dozen photos (and larger versions of the one above.) Please notice all the smiles.  Some irony, of course, but the recognition that life does go on, and important work is being done.

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Posted in: Healthcare Quality, Hospitals, Medical Errors / Mistakes / Misdiagnosis, Medical Records, Patient Advocacy, Patient Empowerment, Patient Safety, Patient Tools

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