Archive for Self Help

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.

Want more great tips for smart, empowered patients?

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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When Patients Read What Their Doctors Write

rd0204ArticleWhen Patients Read What Their Doctors Write  by Leana Wen, MD
from Reader’s Digest (and NPR)

What a great empowerment tool for patients!  Read this article about how Dr. Wen works with her patients during visits to make sure their electronic records are accurate.

Smart Patient Takeaway:  This is a great tool for patients who want to be sure their records are accurate, or have interest in seeing what their doctor is recording about them. (Hint – that should be everyone!) In addition, it sets the stage for a good partnership with your doctor.

Be sure you have the information you need to access your records from home, too.  Then, each time you have a new appointment, or something changes in your record, log in to see what has been added or amended in your record.

If your doctor doesn’t let you share in the input and review process on your medical records, then take a copy of Dr. Wen’s article with you to your next appointment, then tell him or her you would like to participate in your record keeping, too.

Additional Idea:  Using your smartphone, or a small handheld recorder, record your appointment with your doctor.  This will allow you to listen back later to confirm that you remember new instructions and information. Tell your doctor you’ll be recording the session – politely, of course – but don’t ask permission. It is your right to record the session, and it’s a smart tactic, especially when information is easily confused.  (Asking for permission provides the opportunity for the doctor to say “no”.  Or, as Gramma used to say, “It’s easier to beg forgiveness than ask permission.”)

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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: Doctor Communication, Health /Medical Consumerism, Healthcare Quality, Medical Records, Patient Empowerment, Patient Tools, Self Help

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Looking for Trisha Torrey, (former) About.com Patient Empowerment Expert?

messydesk

 

You found me!  Here I am!

And I’m moving back in, here to my personal blog. Home. Where I started writing about Patient Empowerment in 2005.

It’s been awhile since I’ve been “home.” Look around!  You can see how dusty it is. I’ve got to wash the curtains and get them back up. Clearly the place needs to be swept and vacuumed.  Those are all tasks I’ll get squared away in the next few days. Give me a week and I may even get some new paint on the walls.

Are you wondering why I’ve moved back home? 

Simple answer – it’s because I was sent packing.

Most of my regulars know about my work at About.com Patient Empowerment.  I started writing for About.com in late 2007 and in all, I published more than 800 articles on topics from how to be an empowered patient, to how to get your medical records, to how to look up CPT codes, to how to deal with an arrogant doctors and much, much more.  In addition to those 800 articles, I wrote more than 1000 blog posts!  And I would still be writing and publishing there today… except that….

I was terminated June 30.  Gone. Kaput. Right in the middle of my contract year.  They decided they didn’t want me anymore and cut me off. Chop chop.

If you want details, here they are.  But that’s not the point of this post.

This post is to tell you that I’m going to lead by example.  That is – throughout my patient empowerment work, the advice I always give to you is to stick up for yourself and to be sure to take responsibility for the situation you’ve been dealt.  Don’t take crap from anyone.  YOU are the most important stakeholder in your own care and to get what you need, you need to take the lead.

So that’s exactly what I’m doing here.  As much as I loved my work with About.com, it’s no longer an option.  So I’m moving back home, gonna spiff up the place, and will begin publishing again right here to keep my commitment to helping you, my readers, get what you need from the healthcare system.

Here are some of my plans:

  • I’ll be writing articles just like I was writing them before – so – what topics would you like to see?
  • One of the recent changes About.com had made was to take away YOUR opportunity to comment on articles and blog posts.  By publishing here, I’ll be restoring that capability.  So please do comment!  I learn from you every time.
  • In the past two years I was sending out only 5-6 newsletters a year from this personal site, but now that there will be no more newsletters coming from me at about.com* I’ll begin sending from here.  You can help too, by letting your friends know.  Here’s the link you need to get signed up.

Together we’ll weather the healthcare system together, whether About.com wants to help in that effort or not.  I’m still Every Patient’s Advocate. They can’t take that away from me.  And I’m here for you.

Are you with me?  Great!

(Now could one of you big strong guys help me move my desk over there – under the window?  It’s a beautiful day, and I don’t want to miss the sunshine.)

I’ll be back soon with some usable healthcare information.  All suggestions welcome 🙂

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*about.com will likely continue to send patient empowerment newsletters, and for the foreseeable future, they will be my articles. But there will be nothing new that hasn’t been sent out in a newsletter previously. Feel free to unsubscribe if it gets to be redundant.

More:  At About.com, Experts Are Disposable

Posted in: Media, Patient Empowerment, Self Help

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Sometimes It’s Better to Just Say No

Story One: When I was a child (and we’re talking a lo-o-o-ng time ago – when doctors made house calls)… if I got an earache, I would suffer.  REALLY suffer. Mom would drip some warm oil into my ear, and then stuff some cotton in behind it. She’d give me an orange flavored baby aspirin or two.  And I would just lie in bed, or on the couch, miserable.  MISERABLE.  Seems like I would sleep a lot. Two days later, my earache would be gone, and because I was a kid, and resilient, I would be back on my feet.

Story Two: When I was a kid, I fell off my bike as I flew around a corner near my house.  My bike flew off in one direction and I flew in the other, and landed smack on my elbow.  OH THE PAIN!  I pulled the cinders out of my arm, and cried all the way home as I dragged my bike with me.  That evening my dad walked me across the street to see a doctor who lived in our neighborhood.  He felt along my arm, moved it around a little, declared that I had sprained it, then put my arm in a sling where I was expected to keep it for the next few weeks.

Perhaps it’s miraculous that I survived childhood!  But I don’t think so.  I think any of us over a “certain age” had very similar experiences as a child.  We all had sore throats and earaches, we all sprained and broke bones – and we didn’t have the miracles of modern medical care to help.

Fast forward to today.  Today when we go to the doctor, no matter what the complaint, we are met with a barrage of tests, procedures and treatments.  If I had a sore throat and an earache in 2012, I would likely be given a strep test (chi-ching!) and prescribed an antibiotic (chi-ching!)  If I fell off my bike in 2012, I would be given at least an X-ray (chi-ching!), but more likely a CT scan.  I’d be prescribed an antibiotic (chi-ching!) and maybe even a pain killer (chi-ching!)  I’d need follow up testing to see how well everything was healing (chi-ching!)…

Bottom line – healthcare is so much more expensive today because we do things that we don’t necessarily need to do.  We are herded into services that we don’t necessarily need.  And (shame on us) we ASK for things we don’t necessarily need and probably shouldn’t get.

Don’t need?  Shouldn’t get?

Antibiotics, the miracle drug of the 80s and 90s, were so overprescribed that today the bugs they were intended to kill have evolved into superbugs. People die from acquiring infections that didn’t become problematic until the overuse of antibiotics.  Yet – mom takes her child to the doctor with an earache and insists an antibiotic be prescribed for her child.  Two days later, the child is no longer in pain.  (But is that any improvement over the two days it took me to get past my earache 50+ years ago?)

The existence of CT scanners, MRI scanners and PET scanners, and the need to pay for them, compel doctors to order those tests, even in cases when they may not be necessary.  Of course there are times when they are very necessary – but not always, and not as often as they are used now.  When it comes to so much extra scanning, it can create big problems for our health (too much radiation exposure from x-rays or CTs) AND our wallets – imaging is expensive, even when we have insurance.

So how can we know the difference?  How can we be a bit more savvy when it comes to test and treatments, whether or not they are suggested by our doctors?

Last month, a consortium of nine different medical specialties – the very doctors who make money when we have tests and treatments – came out with their lists of tests, treatments and procedures we patients don’t need.  They listed them all on a website, called Choosing Wisely.

If these doctors don’t think we should take these tests, then why would we have them?

What we know is that this elite group has made these recommendations.  What we don’t know is that those recommendations will filter down to the doctors who order these tests, treatments and procedures – because that’s how they make their money, and (they think) that’s how they can defend against lawsuits.  (We can only imagine how unhappy that orthopedist who makes his living running CT scans is with his own peers that tell patients not to get so many CT scans.)

So, knowing that our doctors may not be aware of the lists, or may have chosen to ignore the lists, it’s up to us patients to ask questions.  “Doctor, If I take this antibiotic, how soon will I feel better?  How soon will I feel better if I don’t take it?”  — or — “Doctor, I know an X-ray is much less expensive than a CT scan.  What will a CT scan tell you that an x-ray won’t?  Can I have just the x-ray?”

So yes, fellow empowered patients, it’s time for us to begin making smarter choices, both for our wallets and for our health.  Make yourself generally aware of the new recommendations of tests, procedures and treatments you just don’t need.  Understand that leaders in healthcare who understand about reining in costs, even if they are the ones who lose income, are calling out to their peers to make changes in their recommendations….

Unfortunately, anything in medical care takes a LOT time to implement.  But this is something we patients can do – and do with no detriment to our health OR our wallets.
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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 my 2x per month newsletter
full of Patient Empowerment Tips.

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

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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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Want more Patient Empowerment?
Find hundreds of articles at:

Every Patient’s Advocate

About.com Patient Empowerment

and sign up for my 2x per month newsletter
full of Patient Empowerment Tips.

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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