A few months ago, I was invited to address a group of caregivers who were looking for ways to improve the medical care their loved ones were getting....  From parents with a young child who had been born with multiple challenges, to many my-aged (young at heart) adult-children with older parents to care for, they were there to learn some of the best advice for keeping their loved ones safe as they pursued healthcare on their behalf.

One of the topics I addressed was the danger of drug errors for hospitalized patients.  The often quoted number toll that hospital drug errors take is one drug error per patient per day of hospital stay.  The crowd gasped (as they often do).... but at the end, when questions were being asked, the tenor changed a bit.

Turned out that one of the attendees is a nurse.  She got all over my case, somewhat embarrassing really, telling me that I was wrong about the number of drug errors, that most hospitals now use electronic prescribing (called CPOE - computerized prescription order entry) and that the number of drug errors have dropped "dramatically."  That I should not be frightening people about drug errors in hospitals.

I thanked her politely for her input, told her I only hoped she was right about improved safety when it comes to dispensing drugs in the hospital, and reiterated that it's always better to be safe than sorry.

But as of today, I only wish I had any idea how to get back in touch with her.  Because....

An article in MedPage Today tells us that despite these marvelous new CPOE systems - that the numbers of drug errors taking place in hospitals have not improved. The findings,

In total, 11.7% of the prescriptions contained some sort of error, and 4% of the total prescriptions contained errors that were serious enough to potentially cause an adverse event (most of which were classified as "significant" or "serious" events, although none were life-threatening).

That's about the same rate of errors that previous studies have found are present in handwritten prescriptions, according to the authors.

The point of this post is not to further the argument, although I am concerned that the nurse has let down her guard when she should not do so.

It seems pretty clear that no matter how your drugs are ordered in the hospital - or anywhere else for that matter - that it only makes sense to be double checking any drug you are expected to take.  If you are in the hospital or too sick to be able to pay enough attention, then ask someone to advocate for you - to ask questions, read labels and confirm that, in fact, you're not being asked to swallow (or receive by IV) the wrong drug.

• Prescription Drug Errors Take Lives

•  Learn how to Prevent Prescription Errors at the Pharmacy

• Medicare's Never Events Policy

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Photo © Anneke Schram / 123RF

This is the story of a lightbulb moment - when a painful knee, a dismissive physician's assistant and desperation met social media, a caring orthopedist - and patient empowerment.  This is the stuff that chokes me up.

Dr. Howard Luks is an orthopedic surgeon who has become a Twitter friend of mine.  He writes a blog that helps people understand different orthopedic maladies, symptoms, procedures and surgeries.  Many of his posts are videos (he's braver than I am!).  What distinguishes his work is how patient-centered he is.  Remarkably, despite the same constraints any other doctor might have, Dr. Luks seems to transcend the hurdles so many doctors complain about.

A woman named Shawna posted a question on Dr. Luks' blog post about meniscus tears and why surgery wouldn't always be necessary.  She fell about three years ago and her knee has never been "right" since then.  MRIs haven't revealed anything so far (to the people who have reviewed them), and the physician's assistant she went to simply dismissed her, telling her that, in effect, she needed to just live with it.  Shawna asked Dr. Luks what her rights were.

And Dr. Luks asked me to respond - asking what would I suggest to Shawna to help her get the care she needs.

And so I did, suggesting to Shawna that she was being stonewalled by a PA who has been told by her boss that patients who take too much time should be dismissed or made so miserable that they will leave on their own.  That practice is more concerned about how many patients they can railroad through the office everyday, raking in their reimbursements, than they are about whether Shawna gets any relief for her painful knee.  Shawna needs to get copies of her medical records, then find a doctor who will pay attention and help her.  Not all practices are dismissive.  Clearly, if she could visit Dr. Luks, she would never have gotten the same runaround. She needs to find someone like him wherever she lives.

What happened next is what is so remarkable, and why I have a lump in my throat.  As Dr. Luks has described it, "An e-Patient has been born."

The lightbulb went off in Shawna's head.  All of a sudden she understands that she needs to stand up for herself, and go in pursuit of what she needs.  She knows it won't be easy, but she understands that it's not about asking permission or stepping on toes - it's about taking responsibility.  Shawna's reply,

i had no idea that there could be such a community of people interested in helping people like me, and others, find the tools necessary to stand up to doctors, who we tend to elevate (or revere), or large ins. co's, who we know are only (coldly) driven by greed, but who seem unmovable.  so, i appreciate you all so much...and, my son does too i can say, b/c he has seen me smile quite a bit today, in spite of the pain i feel.  i will most definitely be sharing, with all who will listen, my e-patient experience on this site. i've heard it said that "pain is a great motivator", well, it must be true, b/c i had actually never blogged b/4 this, but i'm glad i finally did, b/c i feel very motivated now.

This is why I do the work I do.  The Shawnas of this world are beginning to advocate for themselves the way they need to.

Will you be a Shawna today?

•  Learn more about what it means to be an empowered patient.

•  Learn more about using social media to get the healthcare you deserve.

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Photo © Fedor Kondratenko

It's the buzz of the internet - a video of my friend and colleague, Dave deBronkart's talk at TED Maastricht (TED = Technology, Entertainment, Design) called "Let Patients Help."

I've introduced "e-Patient Dave" to you before. He was diagnosed with Stage IV kidney cancer in 2006 with a prognosis of 24 weeks.  Just the fact that he gave that talk in April 2011 gives you some indication of his outcome.  In his talk, Dave tells how he beat his cancer.

I encourage you to watch it.  Dave's case for our own engagement in our healthcare decision-making will at times choke you up, make you angry, surprise you, make you laugh, and motivate you.... At the end, you will applaud.

When your doctor wants to dismiss your engagement, I encourage you to ask your doctor to watch it.

A few highlights:

Patient is not a third person word:  How often have you felt like (or observed) doctors, other providers and family members talking about you (or the patient) as if you weren't in the room?  As if you are being observed, but aren't really a part of the experience?

Patients will tell you what the doctors won't:  Dave was able to pursue the treatment he needed - what worked - because he accessed a patient networking and information sharing site called ACOR, the Association of Cancer Online Resources.  As he discussed his kidney cancer with other kidney cancer patients, they suggested he get in touch with one of four doctors in the US that could provide interleukin treatments.

Do you wonder why Dave's own doctors didn't tell him about interleukin treatments?  Well,  Dave's doctors get credit for sending him to the ACOR website.  However, what he learned there is something we empowered patients already know:  that when a doctor or hospital doesn't offer a treatment, they won't tell you about it.  They're not willing to send you off to work with another doctor or hospital - not interested in the competition.

Dave's bottom line, and his charge to his talk's attendees (who, since we watch the video, include us!):  Let patients help.  Patients know what patients want to know.

As patients, we can help each other - we are doing it every day.  As patients, we can insist our doctors include us in the decision-making about our own treatment options.  We are a movement!  Dave's platform, and your visits to this patient empowerment website, prove that everyday.  Let's keep the momentum.

(Thanks Dave!)

•  Learn more about how to use online support groups as resources for your own care.

•  Learn more about why doctors don't tell you about all your treatment options.

•  Learn more about Regina Holliday's painting which Dave highlights in his talk, "Give Us Our Dammed Data"

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Photo - captured from the TED talk

Anyone who has ever waited too long in the waiting room, or has waited too long for the doctor to appear in the exam room, or has waited ad nauseum for test results to be delivered (reminds me of this previous post about When Does STAT mean STAT?) will appreciate this story from CNN's Empowered Patient, Elizabeth Cohen.

Would your doctor pay for wasted time?

Be sure you read that correctly - because it's about doctors who pay their patients when their patients bill them for the overages on the time they wait for them.

The article states that the average wait time at doctor's offices in the United States is 24 minutes.  I have waited for doctors  for far less time - and WAY far more, depending on how sick or debilitated I was, or how difficult it would be to replace them.

I've threatened to bill them for my time!  But I've never really gone there.

I see wait times in a few different ways - needing to assess a number of things:

• whether it's modus operandi (the doctor always runs way too late) vs a once-in-a-very-great-while thing
• needing to assess whether a doctor's practice makes long waits part of my expectation (my GYN also delivers babies and who knows when he'll be delivering babies?)
• perhaps the only doctor of  a specific specialty in town has way too many patients so I can wait - or find an out-of-town doctor

What is the longest you have waited for a doctor, and what did you do about it?

•  Share your story:  Your Waiting Room Experience

•  Or try these strategies to shorten your next wait.

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