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Archive for the 'Politics and Medicine' Category

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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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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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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About.com Patient Empowerment

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Medicare Open Enrollment – Time to Figure It Out

This column first appeared
in the Syracuse Post Standard October 25, 2011

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If you’ve watched TV, read the newspaper, or logged on to any health-related website recently, then you may already know that it’s Medicare Open Enrollment time.

Open Enrollment means you have the opportunity to make choices that affect both your access to the healthcare you need, and the cost of that care, by choosing a payer plan that fits your needs.

Too many Medicare recipients simply default to whatever plan they used the year before, perhaps because they didn’t understand how to assess which plan would work best for them.

But it doesn’t have to be so difficult. There are some excellent resources available. So why not take the time this year to figure out which plan fits you the best?

If you are a do-it-yourselfer, begin with the Medicare Find-A-Plan website. It will walk you through your options, including pricing for the drugs you take, then will reveal your options and their costs. You can compare Original Medicare against many Medicare Advantage plans.  From customer service to co-pays and health ratings, you can weigh cost and coverage against quality to make your choice.

Another way to do your research is to attend plan presentation programs offered by the many insurers that offer Medicare Advantage Plans. They can be very informative, but remember that the speakers are salespeople. Their paychecks depend on enlisting new customers. Don’t be swayed by coffee, cookies and promises! Ask good questions and compare many plans before you sign a contract.

For those who need an additional helping hand, personal, tailored, free assistance is offered to help you sort out the options.  Called SHIP programs (State Health Insurance Counseling and Assistance Programs), they are staffed by volunteers who walk you through your decision making.

If Medicare Open Enrollment seems a bit early this year, it is.  The process was started earlier so it could end earlier, too – December 7th.  Ending the process early means you’ll be sure to get your Medicare ID card in time for early January appointments.

With so many ways to find help, you owe it to yourself to spend some time this Fall to review your Medicare options for 2012 and make needed adjustments.  It’s “only” your health and money, after all.

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

Medicare 101 – The Basics

Open Enrollment (Fall 2011) for Medicare 2012

What’s the Difference Between
Original Medicare and Medicare Advantage Plans
?

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