Every Patient's Advocate

Who’s Really a Patient? Skewed Opinions Result from Inside Information

That seems like a fairly simple question, don’t you think?  Who really is a patient? But the answer is actually more complex than you might realize.

Among the possibilities:

1.  anyone who has ever accessed medical care is a patient – which includes everyone, no matter what their relationship is to the healthcare system (so, for example, doctors would also be considered patients, as would any other provider, or even payers like insurance company employees, or pharma employees, etc.)

2.  anyone who has accessed medical care, but doesn’t have inside knowledge of the healthcare system, is a patient

By dictionary definition, the answer is #1: that anyone who ever accesses medical care is a patient.

But when it comes to defining a patient’s perspective, his or her point of view, then the answer is not so cut and dried.  In my (not so) humble opinion, a medical insider cannot possibly truly understand a non-insider patient’s point of view about their healthcare experience.

Here are some examples:

• When a doctor, nurse or other provider finds troubling symptoms,  s/he doesn’t just make an appointment, then wait for days or weeks like the rest of us do before we see a doctor.  S/he calls a friend and gets in to see him or her right away.  So – what is that patient’s perspective?  Is the point of view going to be the same? No.
• When an insurance company employee needs a medical test or payment for a claim, s/he knows from the inside how to get it taken care of.  Is that the same perspective as someone who struggles to get those services?  Is the point of view the same? No.
• When an insider, who is getting paid under the table for prescribing certain medications or is rewarded by a medical device manufacturer for using that company’s devices (think artificial hips and knees, or spinal fusion material, etc), is asked about the cost of care, they can’t see it the same way as the patient who needs that new hip and doesn’t have insurance.  Do they have the same point of view about their needs?  No.
• When a popular doctor has surgery in his own hospital, in a private room, where the nurses respond quickly to the call button (because he IS one of their favorite doctors!), and is then discharged with no infection, do you think his perspective can be nearly the same as a Medicaid patient treated in that same hospital?  Yet – they are both patients in that hospital.
• When the director of the “National Cancer Awareness and Prevention” charitable organization, the majority of whose budget is underwritten by a handful of pharmaceutical companies, is asked to represent patients on a conference panel to discuss the development and cost of cancer drugs, how objective can her opinions be?  Does she dare step on those pharma company toes by saying what a ‘real’ patient might say?

The subject came up most recently when yet another large, influential healthcare organization decided to hold a “patient and caregiver” forum to discuss “patient-centeredness” – and yet, once again, there were no non-medical-care-industry patients included as expert speakers.  Seriously.

It also reminds me of the many times I have approached healthcare conference planners, offering my speaking abilities, representative of that important patient point of view… and they were not interested.

Their response?  “We are all patients.”  (See #1 above.)  But if what they are trying to do is help patients – well – wouldn’t it be a good idea to ask a patient who isn’t an insider to chime in? Evidently not. They only wanted speakers who were from their industries.

Put another way:  it would be like GM or Honda designing cars without ever asking the opinions of car buyers, or JCPenney only selling size 4 dresses because they never assessed gender or the sizes of their shoppers.  They would swiftly go out of business….  which, of course, doesn’t happen in healthcare because we “consumers” (I hate that word in healthcare) don’t vote with our feet.

I think we need a way to make the distinction. If we are all patients – then what can we do to distinguish between those who do, or don’t, have a “real” patient’s point of view?  Are we, as non-insiders, “pure” patients?  Or are we “unencumbered patients?”

Or, maybe we do the opposite, and use a term to describe those patients who are insiders.  Maybe we call them “industry patients” or “insider patients.”

Or – maybe I’m missing the boat entirely….

This matters. It matters because when non-industry-insider patients are expected to be the representatives of a non-medical-industry-insider’s point of view, that point of view, and the results, get skewed.

And for us patients who don’t live inside the medical industry:
Skewed = Screwed …  In more ways than we can count.

What do you think?  Do you see the distinction?  While we may all access medical care, do you agree that our points of view are different?  What do you suggest we do to help the medical care industry understand and embrace the difference?

Please provide your 2 cents below.

…MORE…

Patients – The Invisible Stakeholders

The Myth of “Doctors Are Patients, Too”

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Why Rob a Bank When You Can Make More Money by Counterfeiting Drugs?

Want to make millions of dollars quickly while risking only a few months in prison if (and that’s a big IF) you’re caught?  It’s not difficult at all. Just set yourself up as a distributor of counterfeit drugs in the United States.

This week’s announcement by the FDA that a counterfeit version of Avastin, a chemotherapy drug that is used for several kinds of cancers and tumors (lung cancer, kidney cancer, colon and rectum cancers – but no longer for breast cancer since approval was removed last year) has been found across the country, infused into the national drug supply, raises plenty of questions about how that could possibly happen.

It was followed by an interesting article in USA Today which partially answers the question.  Counterfeiting is a multi-billion dollar business that is on the rise because it’s so lucrative, and because the penalties are so… well… inconsequential.  I mean – would you be willing to spend no more than six months in jail if you could make millions of dollars for use when you got out?  (Even if you would answer no! I don’t want to go to jail!…  I’ll ask you this…. what if your child had treatable cancer and you had no insurance?  Just sayin’ …)

Avastin isn’t the only drug that may be counterfeited.  Any high cost drug that can be watered down, or manufactured to “look” right even if it is manufactured without its expensive ingredients, is a target for counterfeiters.  Lipitor and Viagra are probably the most apt to be counterfeit, but others like drugs used to treat HIV and AIDs, or diabetic drugs, or weight loss drugs, are likely targets for counterfeiters, too.

So what happens if you are somehow treated using a counterfeit instead of the real drug?  Maybe nothing. Or maybe you die. Or anything in between. The problem is, for the most part, we patients have very few ways we can detect whether a drug is real or fake.

Katherine Eban, in her book, Dangerous Doses, tells the stories of people who died from receiving infusions of counterfeit Procrit.  The conventional wisdom on this most recent discovery of fake Avastin is that there was nothing in the counterfeit version that was dangerous, and it’s difficult to tell within a regimen of 18-20 doses a cancer patient might receive over six months whether one “missed” infusion of the active ingredients has a long-term effect.

The bigger picture problem is that our drug supply is not being well enough protected by the FDA, which is tasked with protecting us. The FDA has no backbone when it comes to protecting us from bogus, counterfeit drug distributors who appear to be selling “real” drugs, but target greedy doctors, pharmacies and hospitals that are so willing to buy “discounted” drugs for their patients, knowing that there will be more profit in their reimbursements.  Experts estimate that about 1% of our drug supply is counterfeit.  That means that 1 out of every 100 administered drugs may be counterfeit, too.

One answer to this is an electronic pedigree system, meaning, from the time the drug is manufactured, until it is given to the patient, it is followed and logged using a bar code type system. If such a system was in place, then even us patients would have a way to double check that the drugs being given to us are the real drugs they are supposed to be.

So why doesn’t the FDA insist on the development of such a system?  Well, actually, they have. But again, they have no teeth, and so far, no backbone.  Every time they raise the issue, the drug companies and drug distributors begin to wail about the added cost to the system.  (Surprise!  Follow the money!)  And so, nothing gets done.

Like other issues in healthcare, it looks like little will happen to improve this system until something horrible befalls someone famous; someone who can actually override the special interests in Washington and insist on development of this electronic pedigree system.

Until then, here is information to help us patients do what we can to protect ourselves from counterfeit drugs.

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10 Patient Empowerment Tips to Post on Your Refrigerator Door

The information center in many homes is the refrigerator door.  From family photos, to postcards to magnets from pizza shops, to phone numbers and kids’ artwork – the important ephemera of our lives can be found on refrigerator doors.

So today I thought I would share some advice that is worth cutting out and sticking to your refrigerator door – 10 empowerment tips that will keep you healthier and help you get the great medical care you deserve.

And if you like them, I invite you to download them (in the form of a small poster) to stick on your refrigerator door! (although – maybe you prefer to stick them on your bathroom mirror or medicine cabinet?  That’s OK too.)

1. Become the expert in your own medical challenges. Read everything you can about your symptoms or diagnosis, ask questions, study anatomy, acquire and review copies of all your medical records. Be the authority on YOU.
2. Using your YOU expertise, partner with your doctors and other providers. While they may have a medical education and experience, YOU are the one who has lived in your body your entire life.  Be an active participant on your own healthcare team. If your provider won’t listen to you, or share in your decision-making, then find one who will.
3. Pursue a second opinionwhenever you are diagnosed with a difficult disease or condition, or surgery, chemo, or long term treatment are prescribed. And if they disagree?  Then seek a third.
4. Don’t be afraid to say NO.  Sometimes less is more. As the authority on YOU, you’ll know when NO is the right answer.
5. Thank your doctors and their staff members when they have been collaborative and helpful.  They work in a tough environment.  Appreciation, when appropriate, can go a long way toward strengthening your partnership.
6. Read and listen past the headlines.  Get the whole story, then pursue additional, objective resources to confirm their veracity and to determine how well they apply to YOU. In particular, be sure Internet health  information is credible.
7. Review your medical bills. Experts tell us that up to 80 percent of medical bills contain errors.  Incorrect bills will eventually cost us all in higher premiums and taxes.
8. Provide support to others. Shared experiences can help others who suffer the same medical challenges you do.  Refer them to good doctors, and support groups, and offer an ear when they want to share their joys, or need to vent.
9. Accept support from others. Whether it’s a loved one, or a professional, sometimes it’s imperative to have an advocate by your side to keep YOU safe, or keep you from being railroaded.
10. Finally, wash your hands regularly and cough or sneeze into your elbow.  Infections are dangerous and deadly whether acquired during a hospital stay, or brought home from school by the kids.  Hygiene can go a long way toward keeping infection at bay and keeping YOU healthy.

Don’t forget – if you like these tips, you can print them out as a small refrigerator poster – here they are.

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The 2012 Elections and the Issue of Healthcare Reform

This column first appeared
in the Syracuse Post Standard
January 17, 2012

During both the 2008 and 2010 elections, the issue of reforming the American healthcare system was the focus of overwhelming amounts of misinformation and disinformation.

Remember the email about Senior Death Panels?  It explained that the healthcare reform bill would allow Medicare to save money by refusing to pay for lifesaving treatment for older Americans.  Of course, it wasn’t true.

Another email stated that the Muslim belief in dhimmitude (surrender or appeasement) would mean American Muslims would be allowed to opt-out of the mandatory insurance rule. Also untrue.

Both inflammatory statements were horribly upsetting!  But it wasn’t a huge leap to figure out who wanted us to believe them.

Now primary season is here again, and some candidates continue to focus on repealing the Affordable Care Act (healthcare reform).  Whether or not you believe healthcare reform should be the law of the land, you owe it to yourself, and those you influence, to separate facts from fiction.

If someone shares “facts” with you that seem inflammatory, upsetting or don’t make sense, then there may be something askew. It’s possible they are true. Or, they may be only partially true, subjective interpretations of the truth, or even out-and-out lies.

Three websites provide neutral, objective analyses of political statements for our review. The best way to determine the veracity of information about healthcare reform, or any other political statements, is to scrutinize them at one, two or all three sites.

One site is the Pulitzer Prize winning Politifact.com. Its “Truth-o-Meter” scores statements on a range from True, to Flip-Flop, to Pants-on-Fire, along with supporting documentation for how the score was determined.

Factcheck.org is provided by the Annenberg Public Policy Center.  One section focuses specifically on email rumors.  Another section examines statements made by candidates and their high-profile supporters  to establish their accuracy.

Finally, Snopes.com is a great resource, too. While it originally examined only urban legends, in recent years it has expanded into political claims as well.

If you see, hear or read a statement from any organization or individual during the election season or any other time, be sure to review it carefully before you share it with someone else.  You don’t want to foolishly believe things that aren’t true, nor do you want to share misinformation or disinformation with others.  Using one of these statement-auditing websites will help you sort out the real facts.

Here is more information about reviewing email claims:

 How to Confirm or Debunk Claims
Made in Email, Blogs or Social Media

From Conspiracy Theories to Bogus Claims
How Can You Ascertain the Truth?

Have you confirmed or debunked a political email claim?
Share your findings!

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