Your Comments – Loud, Clear, and Acted Upon

There simply are not enough hours in the day.

When the “good idea” part of your brain goes into overdrive, and the clock can’t keep up with it, then you’re left with the same 24 everyone else has – with more stuff to do, stuff that takes longer because it’s new.

Such has been my life since launching my patient empowerment and advocacy work in 2005!

All this to explain why I seem to have disappeared from the patient empowerment world – even though what I’ve really been doing is trying to improve the possibility that a patient can get better care – just in a different way.

That different way is through the world of independent patient advocates, based on an acknowledgement made a number of years ago which may ring true to you, too.

From 2005 to 2012, I used to speak to large groups of patients. I would speak on many different topics that related to being a smart patient, like how to make a list of questions for your doctor, or how to find credible information on the internet.  At the time I was also writing for about.com – which kicked me to the curb in 2014 (I still don’t know why!).  I met some really remarkable and wonderful people – who were getting the shaft from the healthcare system and just needed some good advice.

Over and over again, I heard the same comments.  “I know what you’re talking about is right. I need to ask better questions. I need to look up credible information online. I need to shop for better prices for my drugs. I need to vet new doctors to see if they are any good”… etc etc.  And then…

But I feel so lousy!  I’m so sick! I’m too tired! I just don’t have the wherewithal
to do this myself! I need help!

And so THAT is what I have been working on… finding help, and matching the help with those of you who are needing it.

And now – I’m back to blogging and writing again too!  Thus the point of this post.

Here’s where you can find the help you need:  www.AdvoConnection.com

And here’s where you can find my ideas and writing, specifically to help the patients who need it, providing help because – yes – I heard you loud and clear.  Find me at the AdvoConnection Blog.

Thanks for your patience over these many years!  I’ll continue to bring you the best I can, hoping it will translate to better care for you.

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?

Getting Away With Murder? Public Records, New York and Across the US

ollyThis post is two things:

1.  A description of the problem which has to do with money, influence, and once again, it’s the little guy who will lose out.

2.  A call to action for those who live in New York State – where the most egregious of examples is taking place now. (And may be able to be stopped.)

The Problem: 

There is no one comprehensive and accurate repository for information about a doctor’s malpractice record in the United States that patients have access to. (the key: “that patients have access to.”)  Granted, there are plenty of doctor ratings websites out there, but their track records have been dismal when it comes to keeping up with even the most egregious of physician-offenders.

The one neutral reference we have had for learning about doctors’ track records, including the details of the errors of their ways, has been through state-sponsored doctor databases.  Now, these sites have flaws, too. For example, in many states, the information found in them them is self-reported. But at least these sites have teeth, and doctors know they can lose their licenses if they don’t report malpractice suits and arrests.

Even the best of the ratings websites (like Vitals or Healthgrades) have only limited information about lawsuits – usually just that they existed.  At least the state-run sites provide details like whether or not the doctor fought the suit and won, or lost, or what the damages were. Did a patient die unnecessarily? Did the doctor commit fraud?

(In fairness, keep in mind that just because a patient or family member files a lawsuit doesn’t mean the doctor was in the wrong.  And, it’s true, often doctors – or more likely their malpractice insurers – will settle out of court because fighting a suit is such a long, protracted, expensive event.)

However – the point is – that it’s these state-sponsored databases that supply the depth of information we patients need for doing our research on doctors we might want to trust with our medical care. Further, state-run databases and sites don’t rely on advertising, or extortion, or selling our personal information for their income.

The problem is – in New York State, Governor Andrew Cuomo has decided to remove our doctor profiles site from the internet.  He said it’s to save money – an estimated $1.2 million per year.

Yes – do the math – that cost is 6 cents per New York State resident.

I think (personal opinion only) just as likely is that many of the governor’s friends (physician or hospital administrator donors and PACs) don’t want that database to exist.

Now – even if you don’t live in New York, this should be disturbing to you. Too frequently doctors move from state-to-state to try to escape their track records of abuse and death. At least state-run websites aren’t beholden to advertisements and selling your personal information to profit.  They are neutral and independent even if they aren’t updated 100% of the time. Further, if the site gets pulled in NY, then other governors will look at it as a way to 1. save money (a pittance, but to the uninformed it sounds like a lot) and 2. make those physician and hospital donors and their PACs very happy.  You’ll lose your access to that information in your state, too.

So – the call to action for New Yorkers (with thanks to Ilene Corina for this information):

If you want the NY State physician profile site to stay online, and the requirements for them to be updated to stay in force, please call the governor’s office and let him know. It won’t take you a full 3 minutes:

Phone Governor Cuomo at 518-474-1041 ext. 3.  Tell the person answering the phone that  “I want Physician Profiles left in the NY State budget”. You’ll be asked for your zip code (no more – no personal information.)

Today.

That’s my 6 cents.

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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)

 

 

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)

 

Every Patient’s Advocate 2.0 – An Update

updateDo you ever feel like there just aren’t enough hours in your day, and that you can’t possibly do everything you wish you could do?

Not every day, of course!  But yes  – I know you’ve felt exactly the same way.

That’s been my constant state now for the last many months. And because each of the blog posts and articles I write here has always taken me hours to complete (research, writing, editing, finding photos, posting and promoting) – I had to put much of that work on a shelf when other work took priority.

But I sure do miss my regular posting and then interface with YOU – my favorite readers – here at my personal blog… and so, after noodling it over for awhile, I finally figured out how I can fit this work into my already-crazy days.

As you long time readers know, my posts at this site have always been very long and involved.  (just take a look around – you’ll see!) and of course, that’s why they have taken so long to compile for you.

One reason they have always been that way is because there just wasn’t much information available to help patients get smarter, ramp up, empower themselves.  But today – almost 10 years after I started in patient empowerment work – there is far more good information available. Media focuses on smart patient advice far more than it ever did. Many good books have been written. Many patients are getting the message.

abcstatementWith confidence there are lots of good people helping in good ways, I can now make that shift in my approach – in effect Every Patient’s Advocate 2.0!

That is, I’ll become your curator of good, smart patient information.  As I find articles, blog posts, commentary – whatever it is – I will share it with you, give a quick summary, and then I’ll recommend whatever I think you can do with it. That might be to embrace it and share it, or ignore it, scoff at it, fight back – or anything in between.

So I’ll begin with the first post in this new series: When Patients Read What Their Doctors Write

And I’ll ask for requests.  What would you like to see on these pages? Please comment below.

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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)