Archive for Medical and Research Studies

Patients Looking Out for Each Other – When Patients Know Best

chemoWhen oncologists consider recommendations for their patients’ cancer treatment, they will often consider the guidelines published by the National Comprehensive Cancer Network. They expect to find the latest information in effective treatment, based on the best research, along with information they can share with their patients.

But it turns out, that may not be what’s there.

This recent NPR Shots article, How A Group Of Lung Cancer Survivors Got Doctors To Listen, features some smart and bold patients who, while chatting through their Inspire Support Group, discovered that the NCCN’s guidelines weren’t current – and were, for some patients – not as effective as they could be.  Patients who might possibly be effectively treated would instead die. That wasn’t good enough.

So they took matters into their own hands, and got the information updated.

I’ve long believed and have emphatically stated that patients have an important role to play in the determination of the right treatment for themselves. Some digging – online and with fellow patients – can often lead to information their doctors don’t disclose. Sometimes that information isn’t disclosed because the doctor doesn’t know about it (as in the example here – because the NCCN wasn’t current.) Others don’t disclose because they can’t make money from a treatment they don’t provide. Still others just don’t believe in a treatment, no matter what the evidence suggests.

Let this good article from NPR help you better understand why you must work to uncover all the possibilities for yourself.  Here are a few ways to do that:

  1. Get a second opinion if treatment recommendations are at all difficult, long term, or invasive.
  2. Tap into support groups for your diagnosis and ask others about treatment they have undergone, and their level of success.
  3. Hire an independent patient advocate to help you sort out your options.

Update:  3/6/15:  I received a note from John Novack from Inspire (where the support group conversation took place, as mentioned above).  They have received feedback that several people who learned about the updated NCCN guideline for lung cancer then shared that information with their oncologists and changed their treatment for their lung cancer.

While John did not say so (don’t want to put words in his mouth) – the conclusion I reach here is that at least some of those patients will survive for far longer than they would have had their fellow guideline-changing-patients had not stepped up.

I love this!  And appreciate their efforts so much (this includes Chris Newman, the patient featured in the NPR story, and who has commented on this post – below).  They are truly proactive survivors.

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Do you have advice or a story to share that illustrates this post?  Please share in the comments below.

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Posted in: Health /Medical Consumerism, Healthcare Quality, Medical and Research Studies, Patient Advocacy, Patient Empowerment, Patient Safety, Patient Tools, Self Help

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Chicken Little, Wishful Thinking and the 24 Hour News Cycle

chickenOne frightening and frustrating trend we’ve seen since the 24-hour news cycle became a reality (meaning – since we have all gotten used to, and expect, to get our news updated at anytime, day or night, everywhere) – credibility has taken a nose dive. We want to think we can count on the “facts” as reported, but too often they get blended with the not-quite-facts, the incorrectly extrapolated facts, the just-plain-wrong facts – and of course, pure fiction.

The “Who Can You Believe?” question became even more acute over the last week with the realization that NBC News anchor Brian Williams, who I have always liked and would still like to invite for dinner, thinks it’s OK to embellish the truth. If you would believe his stories, you would think he had been shot down in a helicopter or watched bodies floating in the New Orleans French Quarter after Katrina. Neither is true.

Now, Brian Williams doesn’t give patient empowerment advice.  But other so, and like Brian, they come across as so gosh-darn believable!  The problem is, sometimes they aren’t, and we have to do some due diligence to figure out when they are, or when they aren’t, when their advice is useful, and when it’s not, or even when it’s downright dangerous.

Do I think they are intentionally leading us astray?  Sometimes. Do I think they intentionally give us bad advice?  Sometimes.  Do I think we need to confirm their advice with another, more objective information?  You bet I do. Too often what we see is more Chicken Little or Wishful Thinking and not something we should put any stock in at all.

So where can we patients turn? How do we know what’s objective, what isn’t, what’s worthy of our time, and who we can believe?

That’s Gary Schwitzer’s entire focus – so let me tell you about Gary’s work.

Gary founded HealthNewsReview.org many years ago.  As a journalism professor, teaching his students how to write informational and objective news stories, he was appalled at the shift in direction being taken by large news organizations. That is – they glom on to “news” that isn’t really news, because they think it will catch someone’s eye (or ears) – and not because it’s really useful. Further, sometimes they simply regurgitate a press release from a pharmaceutical or medical device company, like “Research Shows that Our New Drug Cures Cancer!”  The problem is, too many people believe it.

But smart patients don’t believe any of it until they have investigated further and assessed its veracity.

I encourage you to take a look at Health News Review to see exactly the criteria Gary’s reviewers use to assess health and medical news stories. You might also be interested in his post about conflicts-of-interest among national TV anchors and medical correspondents. Eye-opening.

Gary’s criteria for assessing news stories are front and center, right on his homepage.  Additional information can be found here:  How to Assess Medical Studies

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Do you have advice or a story to share that illustrates this post?  Please share in the comments below.

Want more great tips for smart, empowered patients?
Read my book:  You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve)

 

Posted in: Follow the Money, Health /Medical Consumerism, Media, Medical and Research Studies, Patient Empowerment, Patient Safety, Pharmaceutical Drugs, Politics and Medicine, You Bet Your Life!

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Time to Put a Stop to Drive-by-Doctoring

As many of my readers know, I speak at meetings and conferences fairly frequently, and most often to groups of patients and caregivers. The focus of the talks I give is usually on a patient empowerment topic – ranging from how to communicate with your doctor, to how to stay safe in the hospital, to a dozen other topics….

Every time I speak to groups of patients, I ask the question, “Have any of you ever felt rushed during a doctor appointment?”

The overwhelming majority raise their hands, and nod, and often turn to the person sitting next to them, poised to share their latest horror story about being rushed, which is often the case after they’ve waited in the waiting room for way too long.  A double whammy.

Frustrating. Maddening. Unfair.  And now, statistically accurate, including its negative effect on both our health and our wallets.

Newsweek Magazine published an article this week called The Doctor Will See You – If You’re Quick.  Written by Shannon Brownlee (author of Overtreated), it quantifies the problem of, what I call, “drive by doctoring” – the concept that we barely see the doctor walk IN the exam room door, before the doctor has retreated back out that door, asking the empty hallway (because he’s no longer engaged with the patient at all), “Do you have any more questions?”

The point to the article (which is excellent – you really should take the time to read it in its entirety), is that over the past few decades, the trusting relationship that used to exist between patients and their doctors has eroded to almost non-existent, and has resulted in bigger problems for both parties.  And both parties are suffering.  Patients don’t like it, and their doctors don’t like it either.

Or (another one of my sayings) – American healthcare is not about health or care. It’s about sickness and money – using sickness to make money.

Here are some of the points that support that:

  • The ideal patient panel (number of patients) for primary care doctors should be fewer than 1,800 patients in order to provide the kind of care patients need.  Today, the average number of patients per PCP is 2,300. And for “Medicaid Mills”, the panel is more like 3,000.
  • To speed things along, doctors interrupt their patients an average of 23 seconds into the answer to the question, “Why are you here today?”
  • One study showed that the average amount of time spent providing “critical information” to patients is 1.3 minutes (yes – that’s MINUTES.)  Your quality or quantity of life only deserves 1.3 minutes?

To those of us who understand this madness, and attempt to be smart patients, there is nothing new here. But the information is beneficial to us for a few reasons:

First – because our world is being driven more and more by data, and not simply our observations and stories. With the quantification of these kinds of problems, the powers-that-be will have to look at solutions, because no nation can afford sicker and poorer people.

Second – because this kind of information is a good reminder to us all that it’s us SMART, EMPOWERED PATIENTS who will manage to get the best of a system that has the capability to be great, but is growing worse every day.

We can’t help those who won’t help themselves… but we can be the ones who will STOP this erosion, and help ourselves.

•  Helping ourselves will mean we find the right doctors – the ones who WILL communicate with us. (A reminder that no doctor is average – they are either better than, or worse than, whatever average is. As empowered patients, we search out the “better than”.)

•  Helping ourselves means we place ourselves squarely in the middle of our own medical decision-making – we don’t default to letting someone else make them for us.

•  Helping ourselves means we find information to support our decisions, making sure it’s credible and reliable.

•  Helping ourselves may mean that we try to manage our relationships with our doctors on our own, or it may mean we ask someone else to help us.

•  Helping ourselves will mean understanding the roll the pursuit of profit takes on our health – we will understand the concept of Follow the Money and why that makes us poorer and sicker.

It took decades for the healthcare system to devolve to what it is today (just in time for us baby boomers to utilize it in huge numbers with, in too many cases, horrible outcomes.) It will take decades more to fix it.

Most of us don’t have decades to wait – and for that reason alone, we must engage in our own care.  We can’t afford, for our health OR our wallets, to let drive-by-doctoring take its toll on us or our loved ones.

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Posted in: Doctor Communication, Follow the Money, Health /Medical Consumerism, Healthcare Quality, Media, Medical and Research Studies, Patient Empowerment, Patient Tools, Self Help

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Check Out Those Health Charities Before You Donate

This column first appeared
in the Syracuse Post Standard
December 6, 2011

It’s that time of year again.  The holidays, of course. But also the end of the tax year, when charities, including groups like cancer societies or hospital foundations, are pleading for donations.

Each year in December my husband and I make contributions to the charities we think are important, many of which are health-related.  Last year money was tight, and we knew we would either have to cut back on how much we donated, or leave some organizations off our list.

To help us make those difficult decisions, I did some background research on each of the charities we ordinarily support. I was surprised at what I found!  And learned some tips to share with you, too.

First, I learned that when children need specialized cancer treatment, they will get the same treatment  whether they live in Paris, Tokyo, Sydney – or Syracuse. Pediatric oncologists worldwide share their research and successes to the benefit of children everywhere.

I had to ask myself – why would we send a contribution to a children’s hospital out of state?  Since children receive the same specialized treatments, doesn’t it make more sense to donate in our own backyards?  I’m sure those famous children’s hospitals provide excellent care.  But if my child was sick, and I had to stay with her in a city far away, how would I get to work?  Where would I stay?  Bottom line – we decided to donate to our local children’s hospital, knowing local kids would get the great care they need.

Next up – family interests. Within my husband’s family or mine, we have loved ones who have dealt with Alzheimer’s, diabetes, lymphoma and breast cancer.  We have always donated to those very large, national charitable foundations, thinking our money was going toward education, research, and of course, a cure.

Not so fast! It turns out that not all charitable foundations are equal – including those we’ve sent money to each year.  I discovered that some charities are actually quite questionable. For example, too much of their money goes toward “undetermined” administrative costs. Or worse, only a small percentage of their budget goes toward their stated goals of education, patient support or research.  One very well known charity is spending the bulk of its donations on legal fees, suing smaller charities!

Based on that information, we decided against supporting two of the organizations we’ve sent money to for years.

As a result of this process, I realized that if more of us were choosier about our donations, health-related or not, the most effective and efficient organizations would have more funds to really make progress with their missions – a benefit for everyone.

You may want to review your charity choices, too, to be sure your donations have the best chance of accomplishing the goals you think are important.

Here are some additional resources for
choosing the best charities for your donor dollars:

How to Donate Money to Health and Disease Charities

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Posted in: Follow the Money, Health /Medical Consumerism, Healthcare Quality, Medical and Research Studies, Politics and Medicine, Self Help

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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.

……………… ADDITIONAL RESOURCES ON THIS TOPIC ………………

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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Want More Patient Empowerment?
Find Hundreds of Articles at:

Every Patient’s Advocate

About.com Patient Empowerment

…and…
sign up for 2x per month newsletters of
Patient Empowerment Tips

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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