Patient Empowerment

I truly do love you, my readers.  Naw - not in a romantic way, of course.  But there are many things about you that put a smile on my face, and make me appreciate you.

So, in the spirit of Valentine's Day, I want to share my love for you:

•  I love that you reach out - in good times and bad.

•  I love that you trust me with your well-being enough to ask questions when you can't find answers.

•  I love that you disagree with me sometimes because you make me think harder about my ideas or suggestions.

•  I love that you share your stories with others, and participate in the Forum.  Trouble shared is trouble halved.

•  I love that you respond to others when they seek help through comments or questions.

•  I love that you offer opinions and that we can all agree to disagree.

•  I love that you make suggestions or share ideas for articles.

•  I love that you send me new resources.

•  I love that you share my anger at the stupid and frustrating things that other participants in healthcare do to make life difficult for us patients.

•  I love that you are learning from the advice I offer and that you feel empowered when you read these articles.

So Happy Valentines Day, dear reader!  And thanks for sticking around.

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Last week's Health Affairs issued a report on a survey of 1,891 doctors about their beliefs and habits as they pertain to their communications with patients.  The bottom line?  "Do as I say, and not as I do."

This will come as no surprise to empowered patients, but the extent of the hypocrisy is, frankly, disturbing.

According to the Health Affairs abstract:

The vast majority of physicians completely agreed that physicians should fully inform patients about the risks and benefits of interventions and should never disclose confidential information to unauthorized persons.

And yet, according to Health News Review:

• About a third of physicians responding, "...did not completely agree with disclosing serious medical errors to patients."
• About 20%, "did not completely agree that physicians should never tell a patient something untrue."
• Nearly 40%, "...did not completely agree that they should disclose their financial relationships with drug and device companies to patients."
• About 10% acknowledged that they had told a patient something that was untrue in the previous year.

Dr. Otis Brawley, who writes for CNN, took a stab at explaining some of these results.  From suggesting that sometimes doctors just have bad days, to the fact that they are still human, to their fear of litigation...

...To ego. No, he didn't use the word ego, but that's what he meant when he said, "But my experience is that the discomfort of addressing one's own failings or weakness is more commonly the reason for not coming forward."

To many of us patients, the only thing new here are some real numbers.  We've known for a long time that sometimes our doctors are not entirely truthful.

But here's the problem....

We patients don't know when our doctors are, or are not, telling the truth. We don't know when they are shading the truth, or withholding the truth.  And according to this survey, and Dr. Brawley's explanation, it may be the very "best" doctors (meaning the ones we, ourselves, trust) who aren't being straight with us.

So here are some ways we patients need to protect ourselves:

1.  If you are diagnosed with something that requires any sort of difficult treatment regimen (surgery, chemo, radiation, lifelong drugs) - then be sure to get a second opinion.

2.  Even if your diagnosis isn't life threatening, you can double check other possibilities by trying the process of differential diagnosis yourself.

3.  Be sure you are being given information about all your treatment options.  Doctors may not tell you all of them, sometimes for understandable reasons, but too often because they just think you should do what they say (or because they can make more money from one option than another.)

4.  Do a good job of due diligence with any recommendations given to you, whenever possible.  Ask other patients, do some research online, find ways to either verify what your doctor has told you, or when you find alternatives, keep track of them and ask your doctor about them during your next visit.

4.  Don't put up with an arrogant doctor who can't communicate with you.  Find a doctor who will partner with you to find your best outcomes.

5.  Trust your own judgment and intuition 100% before you trust your doctor.  That may mean you have to change doctors if you believe you're not getting the information you need.

There are dozens of other things you can do to be sure you are getting all the information you need.  Now that we see real numbers that outline how often our doctors aren't totally honest with us - how can you afford not to double check and verify everything you're being told?

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For the past week or 10 days, I've been studying and writing about patients and privacy issues.  It was time to update some of the articles I wrote years ago, electronic health records (EHRs) have advanced since then, and once that FICO medication adherence score issue reared it's ugly head just a few weeks ago - it just seemed like it was time to make sure the information I provide about privacy is current.

Just in the past few days, I've published new articles that included a list of all the people and organizations who can get your medical records and use them for all kinds of reasons (believe me, the word privacy just does not apply!), information about all the ways our privacy is violated, health and credit issues, even the many ways supermarket loyalty reward cards might affect the cost of our health insurance.

And honestly, it's that kind of research and this kind of writing that puts me in one of my most cynical moods.  We know full well that American healthcare is all about making money from sickness, but when you really dig into all the violations of our privacy, and the reasons for those violations, well... cynical is too mild a word.

And then, this article from USA Today popped up in my google news alerts, causing that cynicism to sharpen even more.  It's a story about hospitals that are going through their patient records, mining them for the names and contact information of people who fit two criteria:

•  First, they have great health insurance, the kind that reimburses doctors and hospitals top dollar.

•  And second, they have the potential for a medical problem that is expensive to fix. That makes these folks great customers if the hospitals can lure them in.  Problems like heart disease, cancers like lung cancer, and orthopedic problems like bad hips or knees require expensive testing and treatment.

Goldmines!  Hospitals call it "customer relationship marketing."

Their goal, of course, is to convince those patients to become regular "customers" of their hospitals.  They offer them expensive screenings in hopes, of course, of finding expensive-to-treat problems. What we know from many other sources is that all that screening isn't necessarily a good idea. Well - at least it's not good for those patients, who may end up having more expensive tests, invasive procedures, and other  services offered that they will be too scared to turn down even if they don't really need them.  It's plenty good for the providers who are turning a profit.

We smart patients don't have many ways to arm ourselves except through information.  Make yourself very aware of the healthcare privacy violations that  take place constantly, and don't become a victim of someone's attempts to make money off care you may not really need.

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Suppose you are very sick - terminally ill.  You've been through the ringer with so many drugs, so many different forms of treatment, difficult side effects, very little quality of life...  now your doctor wants you to have ONE MORE THING - surgery.  If the surgery works, then it will keep you alive longer.

Since you trust your doctor, you make arrangements for the surgery.  You have no idea what to expect. You don't really know anything more than the fact that when you wake up, the surgery will be over.  You're not sure how long you'll be hospitalized, or how long it will take to recover.  But you're excited because you'll live longer!  So your feeling is... you just really want to get it over with.

But wait!

Along comes a nurse who spends some time with you as you lie in your hospital bed.  Since you realize you know next to nothing about your impending surgery and what to expect, you start to ask her some questions....

The more answers she gives you, the more you realize... maybe this surgery isn't what you want after all.  You had no idea what was involved, how debilitating it will be, how much pain you'll be in, how much it will impact any quality of life you have left, even how risky it is - and it IS risky.  You didn't even know you had a choice.

No one told you that you could refuse that surgery! And now that you know that... well, maybe you just don't want this surgery after all.  But what are your options?  What other possibilities are there?

So the nurse helps you understand.  She explains that you can say no, that hospice and palliative care are options.  As you talk it through with her, you realize that you'd rather not suffer the results of that surgery. You'd rather keep any quality of life you still have, even if it's for a shorter amount of time.  At least you know you have to give it some more thought before deciding to have this surgery.

And so, to help you further, the nurse orders a consultation with those who can help you further in the decision-making process - case management.

So for now, surgery is off.  You are relieved.  You go home to figure out what to do next.

But not long afterward, you learn that the nurse who was so helpful, the nurse who answered your questions and walked you through your options, the nurse who was truly your advocate, in your court, has been fired.

Why?

What hospital personnel told the nurse is that she was fired because she did the doctor's job.  Her job was not to educate a patient.  She was there to do what the doctors told her to do, not answer questions about treatment from her patients. And it was against their rules because she ordered a consult from case management.

They say the truth is stranger than fiction.... and in this case.... this is a true story. The nurse is Amanda Trujillo, and the hospital is Banner Del Webb Hospital in Sun City West, Arizona.

And we can make an educated guess that despite what the patient was told about why Amanda was fired, the truth is that she was fired because the patient decided against the surgery. The doctor and hospital had abdicated their responsibilities, therefore, not only had Amanda embarrassed them, but she cost them money.  That surgery would have meant big bucks for them!  But no longer....  and so, Amanda is no longer working for the hospital.

Further, for good measure, the hospital filed a complaint with the Arizona Board of Nursing.  Amanda can't get a job as a nurse anywhere else either.

So what does that mean for us patients?  Well, that depends....

It depends on whether we think nurses should be advocates and educators.  They are trained to be both and most nurses I know are great in both roles.  But clearly Banner Del Webb Hospital doesn't think they should be advocates or educators - and I suspect Banner Del Webb isn't the only hospital that makes nurse do their jobs with one or both arms tied behind their backs.  It would be like telling an auto mechanic he was expected to do everything else but work on engines.  Or telling a teacher she is supposed to teach everything but reading.  Having policies in place that restrict nurses from advocating or educating is a ridiculous notion.

Or - maybe not.  If it was against hospital policy, well, maybe Amanda should have paid attention? Didn't she realize it was against hospital policy for her to order a consult with case management?  Maybe she should not have stuck her nose into that patient's medical business.  Maybe she should have known better about the policies of the hospital and where her boundaries were....

What do you think?  Was Amanda doing her job?  Or did she cross the line?  Please take this poll and share comments below.

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Every day I hear from someone else who either needs help, or provides help.  Patient advocacy - helping patients get the healthcare they need and deserve - is becoming more important every day.

And yet - in general, the American public (much less Canadians, Brits, Australians, Greeks or others who I know read this blog regularly!) are barely even aware that professionals exist to step in and help out.

Yes - health advocacy professionals.  People whose only business is to hold the hands of patients (clients) who have undiagnosed symptoms, or a devastating diagnosis that requires hard decisions and difficult treatment, who need someone to make sure they don't get a hospital infection, or who can help them sort out their overwhelming medical bills.  Their work is focused on making those connections between patients and their providers that too often just don't happen the way we want them to, finding resources patients need when they don't know where to look, and facilitating all those aspects of healthcare that we never think of until we are faced with needing them.

Professionals who are paid privately - not covered by (or beholden to) insurance companies or other payers. Advocates who have no outside money influences or conflicts of interest which will entice them to steer you in a direction that improves their lives instead of yours (as in - follow the money.)  People whose only interest is in your improved outcomes.

So it's time to tell those stories - which is what we are now set up to do.

If you are a patient or health advocate or navigator and can share the story of one of your patient-clients that will help the general public understand the benefits of working with you - or any patient advocate - please share your story!

Patients will benefit by gaining a better understanding of how a patient or health advocate can help them.

And you, the advocate, may benefit from hearing from more folks who need and want your help.

•  Professional patient advocates and navigators:  Share Your Story

•  Caregivers and loved ones:  Separately, we have a place for you to share your stories, too.

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Two conversations this week remind me that sometimes what we say isn't so bad, but how we say it can really mess things up.

One conversation took place with a gentleman who wanted to talk to me about a business idea.  We had a loooong conversation - made longer because we disagreed about PHRs.  Except, as it turns out, we don't disagree at all.

PHRs = Personal Health Records - I've written about them, and believe that they are mostly pie in the sky.  In my world, a PHR is a record patients keep for themselves, and are rarely used by, and never fed by their doctors or other providers.  In fact, that's the definition used by MyPHR, too - a non-profit group that is a thought leader in all things PHRs.  The KEY here is that providers don't add any patient records to them;  patients must maintain them themselves.  And mostly, patients just don't.

In fact,  I see so many problems with PHRs, that my concerns almost derailed the conversation until....

Until I realized that we weren't using the term PHR the same way.

He was using PHR to refer to a patient's digital medical record.  One patient, one record.  That shared-with-every-provider standard that the US is working toward.  The one that will contain all our bond fide medical records, that all our providers will feed, and we will have access to.  It's the record that I call (and that the industry calls) an EHR or EMR (electronic medical record or electronic health record) - and thus you can see, that our terminology was different.  No wonder we disagreed!

Once we figured that out, the conversation went swimmingly.

The second misconception came from a point I tweeted, when my tweet showed up on LinkedIn.  A fellow patient advocacy supporter, took me to task because several weeks ago, she and I had that same conversation - that I am not a fan of PHRs.  My tweet had heralded the fact that one of my local hospitals had just pulled the trigger for patient access to their own medical records.  She felt I was being supportive of something I had told her I did not support. Another misunderstanding between PHRs and EHRs - and more explanations needed.  And yes, now we have cleared the air.

So why do I raise this today?  The truth is - these points and misunderstandings about PHRs vs EHRs are really very minor.  Who cares, right?

But what isn't minor is when you and your doctor aren't using the same terminology, or when what she says, and what you hear (or vice versa) are two different things.  Like when she says "three times a day" - and you aren't sure whether that means breakfast, lunch and dinner - or every eight hours.  Like when he tells you you'll recovery quickly from minor surgery, and you think you can go back to work, and he means you're supposed to lay low for a week.

What we learn from all this is to be clear -and to ask for clarification.  Be concise in your conversation - and ask for your provider to be concise, too.  If there could be shades of meaning in something you are told, then ask for more information.  Choose your words wisely, too, so they can't be misconstrued.

Here are some points to consider when it comes to communicating with your doctors and other providers clearly - whether the conversation takes place about your body, or your records.

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Here's a thought provoking post from Kevin MD's blog, written by Dr. Martin Young, entitled Isn't it time for a patient rating system for doctors?

Dr. Young suggests that he understands why he is judged by his patients through doctor ratings sites, but that sometimes its unfair, and sometimes patients behave unfairly toward him. He admits that he makes mistakes on occasion (all human beings do) but he feels as if some of his patients judge him and disdain him long past the amount of time they should. He thinks they should get over it. The ones that don't, he labels as "bad patients."

And the comments to his post ensued! They were made by doctors and patients alike. Some were respectful, some were not. Some are well thought through and make good points, but some shot from the hip without regard to good reasoning or reality.

I should note here, that Dr. Martin lives and practices medicine in South Africa. Yet what a nerve he seems to have struck across the globe!

I have a few comments - removed a distance from the conversation and hopefully a bit more objective and less emotional:

1. Doctors judge patients, and record those judgements, every day. We know there are codes in our records describing who we are and how we behave. We know conversations take place at the nurses' station in the hospital. We know patients are blackballed and dismissed every day. Doctors don't need a rating system for their patients. They are already rating us.

2. Sometimes patients deserve to be dismissed! There are any number of behaviors that drive doctors crazy, but beyond that, there are behaviors that mean that doctor and that patient should not be working together under any circumstance.

3. Dr. Martin claims he has patients who continue to hold a grudge. They continue to see him and continue to voice their disdain. Well, maybe the South African system is different from ours in the US, but if any patient told me that's how she felt about her doctor, I would tell her to find a new one fast. And if any doctor told me he was having that problem with a patient, I'd suggest it was fair for him to dismiss that patient.

Regular readers know that I am not a fan of doctor ratings sites. Well, I'm not a fan of the idea of rating patients either. It would be a little like Match.com allowing dates to rate each other. Way too subjective!

The right doctor-patient relationship is like a good marriage, or a good partnership. And - as Gramma used to say - there's a lid for every pot. There are better ways for patients to figure out which doctors they want to see. And sometimes there are reasons to dismiss those patients who doctors don't want to treat any more.

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Hey y'all!  Paula Deen's got type 2 diabetes, didja hear that?

Of course you did.

Regular readers know I am not a fan of celebrities telling us how to manage our health.  But here comes Paula Deen, the darling of butter, sugar, white flour, marbled red meats and plenty of salt - telling us that diabetes IS manageable.  Yes it is!

It turns out that Paula was diagnosed three years ago with type 2 diabetes and kept it under wraps.  That's where it should have stayed, if you ask me.  She decided not to say anything before now because, as she told the Today Show's Al Roker, "I'm not your doctor!"

But it turns out that MONEY can make her say something!  Yes it can - and Novo Nordisk, makers of diabetes treating drugs, was willing to pay her enough to talk about them on TV, online, probably on the radio, too.  So maybe she's not our doctor - but yes, she can still be bought.  And her message makes it sound like we can still eat all those foods that clog our arteries and put fat on our bones to our heart's content because, well, Novo Nordisk wants you to know that diabetes is manageable!  Not to mention that her entire cooking show would go out the window if she dared confess that maybe her fatty, sugary diet had anything to do with it.

(Oh - by the way - manageable really means you can inject yourself with THEIR drugs 2-3 times a day - or more - because your pancreas is shutting down.  It also means you need to keep getting your feet checked because you're at risk of getting them amputated, and your eyes checked because you're at risk of going blind....  yesseree - manageable!)

Once again we have a case of someone well known and beloved by many, endorsing drugs in the media.  WRONG!  Don't listen.  Let Paula go back to cooking her delicious, if deadly, concoctions. Cook one for yourself once a month if you must.

Smart patients know that professional cooks are not the ones to be giving us medical advice.  Like other celebrities telling us to "ask your doctor," they are simply shills for drug companies.

And a simple note to Paula:  oh, Honey. If you had only come clean on your own, without that big Novo Nordisk paycheck, I might have had some respect left for you.

Learn more about celebrities and drug endorsements (think Sally Field, Antonio Bandaras and others, too.)

Here's how to use drug ads to benefit your health (really!)

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Prescription drugs are expensive, whether you pay for them in cash, have to dig deep to cover the donut hole, or have to pony up a co-pay even though you have insurance.

But someday it's possible that the real expense of prescription drugs will have little to do with the cost of their purchase, and everything to do with whether you actually fill the prescription, and purchase the refills on schedule.

Enter FICO - Fair Isaac COmpany - those diabolical business people who invented credit scores to help control whether we Americans can make credit purchases. Now they will tell you that they only cough up a number - that we individuals actually control our own credit scores because we control how well we borrow money and pay it back.  I can buy that.

But now FICO has invented a new score - the FICO Medication Adherence Score.  It will measure how well we fill and pay for our prescriptions - as if that is some accurate measurement of how adherent we patients are, and therefore how well we control our own health.

Seriously?  That's one of the most ridiculous data uses I have ever heard of - and I am not alone. There are so many reasons patients don't fill prescriptions that don't relate to whether we think we should take them. They may be too expensive. We may have an allergic reaction and therefore do not fill subsequent refills. Or maybe there is a shortage - and just how much control does anyone thing we patients have over drug shortages?

Thing is - I have to give FICO some credit. When you read about all the organizations who will pay them for the information and what they will use it for, you'll have to agree with me that the idea is genius.

It's just that it's based on the wrong conclusions and assumptions!  Garbage in, garbage out.  And guess just who will end up paying for it in the long run?  Of course. We patients.

Sometimes the best way to beat a ridiculous idea is to join it - or game it - or intentionally try to mess it up.  So I've come up with some ways to do that. I invite you to take a look, to make smart decisions about affecting your FICO Medication Adherence Score that won't have a negative effect on your health, and to join me in doing our best to send FICO back to the drawing board.

•   What Is the FICO Medication Adherence Score?

•   How to Control Your FICO Medication Adherence Score

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Learned this week about a contest some of you might be interested in entering.  Truth is, I hear about contests from time to time - in fact, whoever is sponsoring them contacts me asking me to share the information with my readers.  But I always turn them away, because in almost every case, what they ask you to do creates plenty of plusses for them, but not much, if anything, for you.

But this one is different, because it has real prize money associated with it AND because it's an initiative of the federal government.  Yes - you read that clearly - the words "initiative" and "federal government" aren't usually found in the same sentence, are they?  But today, they are.

The ONC - Office of the National Coordinator (Health Information Tech, meaning, electronic health / medical records and improving medical care delivery through the use of technology) invites you to submit a video about your experience using technology to improve your health.  Some examples are: creative and innovative ways of e-mailing your doctor, using an online patient-portal to manage your health information, or downloading a mobile application that sends medication reminders.

There are a few rules, of course, such as:  no longer than 2 minutes, ties to a New Year's resolution, shows how you use technology to achieve your resolution, etc.  You'll also need to link your video to the website at www.HealthIT.gov.

The rules, prize explanations and disclaimers are all described at the ONC's Healthy Challenge website.  Submissions must be in by February 16, 2012, and all you do is upload your video to YouTube or Vimeo, and fill out the form on the challenge website.

So - this post is actually two invitations to you!  The first is for you to make that video and submit it to the contest.  Then, when you do, will you come back here and link to it (at YouTube or Vimeo) for the rest of us to see?

Good luck!  I'd love nothing more than for one of my patient empowerment readers to win!

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