Loss of Medical Privacy? Is that OK?

Yesterday, Phil Galewitz reported for Kaiser Health News (reprinted in USA Today) on a practice that is one of my biggest disappointments in our health care system, the sale of our personal health information for the benefit of someone else.  I do not mean the use of de-identified medical information to improve public health, medical quality, enhancement our ability to treat disease, or even for law enforcement.  I am talking about the use of your individual health information to try to sell you something else that you may or not need.  Did you ever wonder why all of a sudden you started getting ads for diabetes supplies?  Or why ads for erectile dysfunction started arriving in your mailbox as well as your email?  It is because your personally identifiable medical information is being shared to improve the bottom lines of those who have access to your medical records.  The story highlighted the practices of hospitals that use information from their medical records to peddle other services to their current or former patients  Partnering with mass marketing companies, your hospital knows a lot more about you than is present in their records.  For example, if you smoke, you get a directed ad for lung cancer screening.   Believe me, when you come in for a “screening,” something can almost always be found that ”needs” to be done.    Screening can be a hospital’s or doctor’s best friend.  It all depends on how ethical or financially strapped the provider is that determines how far evidence-based scientific medical practice will be stretched.  Examples of abuse are easy to find.

I have some personal experience with these marketing practices, and so do you.  For many years, my neighborhood drugstore printed advertisements on my receipts trying to induce me to buy more expensive drugs or treatments.  The drugstore knew what individualized ads to print because they had my drug and diagnosis history.  The conflict of interest bothered me, but I tried to ignore it.  I took a brand-name antihistamine prescribed for me by my physician.  Because I did not want to bother my doctor, I once wrote my own prescription renewal.  [I know that is not a good idea, but we are not talking about Percodan® here, and the drug was soon slated to go over-the-counter.]  As soon as the brand name drug went off-patent, I got two direct letters from a drug company trying to convince me that their new and expensive brand-name drug was much better for me than the old drug that had just the month before been marketed with equal enthusiasm as God’s gift to the allergic, and even great for kids in school because it would not make them sleepy.  The kicker is that I got a letter as both the patient and the doctor.   As you might imagine, indignant Peter called the corporate headquarters of the drugstore to complain and find out how the drug company knew I was taking the drug, and that it was none of their business.  The company told me that they did not reveal my name to the drug company and that the correspondence was paid for by a grant from the drug company to a third party marketing business partner of the drug store.  To me that was a distinction without a difference.  In a world where every square inch of our local sports arena seems covered with advertising; and every play, timeout, basket, or injury seems to have some sponsor attached to it, you can imagine how valuable your personal health information is.  Just as the temptation to cheat cannot always be denied in sports, so can you assume that someone, somewhere is trying to play games with your information and your health.

It is not just self-righteous Peter that gets exercised by these practices: grass-roots doctors are also unhappy.  Not long ago, the Greater Louisville Medical Society passed a resolution calling the sale of physician prescribing information to drug companies and other third parties unethical and demanding an end to the practice.  (We don’t use the term “unethical” as often as we should in our profession!)   However, the local society was overruled by the leadership of the Kentucky Medical Association (KMA) because the parent AMA makes millions of dollars doing exactly the same thing.   I hope that personal advancement in the national organization was not one of the reasons the KMA blocked Louisville’s resolution but how can we know?  But that’s exactly the problem with even perceived conflict of interest such as we are writing about today.

Your medial information has always been available for the use of others without your knowledge.   When I became Medical Director of a large managed care company in Louisville some years ago, I was surprised by requests from employers for information about their employees.  Such requests had apparently previously been honored.  For example, one large hospital employer wanted to know as soon as any of their employees became pregnant.  The justification was that the employee could be encouraged to enter maternal wellness programs.  Of course the hospital would then also know which of their employees might have a subsequent miscarriage or abortion.  Doesn’t that freak you out?   It did me.  I refused that request and all subsequent ones for personal health information.    I had and still have no confidence that the employers were ultimately denied what they wanted to know. After all, it is they and not the employee/patients who are the primary customers of insurance companies.  The often-complained-about new privacy laws in HIPPA were written for a good reason.   I hope things are better now with the way that medical information is handled in our system of many operators, but we cannot know unless we have more transparency, and that is lacking.  What I see are end-runs and work-arounds such as used by the hospitals in this story.  (The drug companies lobbied for and got special exemptions in HIPPA.)

So why is such sharing and marketing such a bad thing?  The hospitals interviewed for the article claim that they only want to improve access and that they are providing “education” about things that are good for their patients.  They acknowledge they are marketing only their most profitable services and justify the practice as a means to provide less profitable services to others  After all, more is better– right?

Wrong!  The problems are legion and exceed both the time and space available here. Just off the top of my head:

• Even if the offerings were medically justified, targeting only those with high-paying insurance discriminates against the uninsured, the underinsured, those with high-deductible insurance, or those with Medicare or Medicaid.  Federal or state government or any managed care company worth their salt would not stand for this for a second.  Hospitals should not be in the business of discriminating.  All who walk in the door should expect equal treatment.

• The practice of direct marketing to the patient cuts out or devalues the judgement of any physician advisor the patient might have.  Just because the drug companies have gotten away with it doesn’t make it right.  Remember too that all the hospitals in Louisville, and presumably elsewhere, have hired their own doctors.  Getting your regular doctor’s council or approval is no longer necessary to use a hospital’s facilities.  These employee doctors will participate in the testing and procedures. They will unavoidably be also thinking about their own salaries and jobs.  Doctors were lying to themselves when we claimed that drug company connections and money did not affect our practice behaviors.  We are lying to ourselves  again, and to you, if we maintain that being employees of a hospital will have no effect on how we practice.  Wouldn’t you rather have no doubt  that we work for you alone?

• If hospitals were really interested in serving the public, they would promote things they were good at, not just things that made them the most money.  They would back up their competence with facts, not marketing puffery.  Our hospitals deserve our absolute trust, but in today’s climate, they need to earn it.

• When I was researching such things, every study I read determined that when physicians had a financial interest in the testing, equipment, or facilities they used, that they spent more of their patients money: 30% more is the average I remember.  None of those studies claimed that the extra services were medically necessary.  Why does not the principle involved apply also to hospitals?   If your eye is always on the bottom line, there is no question that unnecessary medical services will result.

• Screening in particular is subject to the greatest abuse.  Screening may be defined as testing people who have no symptoms of disease.  In a limited number of conditions, screening can be justified.  However, you get, as do I, ads from one mobile screening service or another offering a broad assortment of tests for various health conditions.  Sometimes hospitals are involved.  I have never personally seen these promotions justified, let alone recommended by any respected medical authority. (Presumably the licensed doctors who read the tests somewhere do not object.)  Everything I have ever learned or believed in as a physician screams out against such “screening.”  Shotguns are used for killing, not for healing.   Some people will be unnecessarily harmed and killed by complications and misadventures resulting from poorly targeted medical testing.  Hospitals can be guilty of over-serving their patients. Every time you go into a hospital there is a chance you will not come out.  You must have to have a good reason to go in.  Nothing in medicine is perfectly save.

• I have little doubt that hospitals are categorizing the marketing expense of these endeavors  as “education” and are applying the sums towards the community benefit they must prove in order to maintain their non-profit advantages.   I say, use the money to provide healthcare for the under-served for whom your favorable tax status was granted.  The retort will be the standard, “no margin, no mission.”  That is to say, the ends justify the means: we have to make money somewhere.  It might seem hard to argue with that, but this is no basis on which to build a good medical care system.  I say that if you have to depend on gimmicks and unnecessary medical services to stay open, then you need a different business model or you should close your doors and let someone else try.

• The nature of the promotional material itself used by hospitals sometimes seems written by marketing or movie companies rather than by medically trained professionals.  Just yesterday I read an ad in the Louisville paper that told any woman that if they had any single one of the symptoms of neck pain, jaw pain, backache, nausea, or dizziness they should call 911 and go to one of their hospital’s emergency rooms immediately.  I can’t read the ad any other way.  Yes, those individual symptoms can be part of the constellation of symptoms that occur in the setting of a heart attack, but they are also symptoms of being alive.  In my opinion such advertising represents scaremongering.  Some people will actually respond to this misinformation the next time they have their inevitable back pain.  Some time ago, I received a personal mailing at home from the same hospital using similar medically misleading language about heart attack.  It was attached to a simulated stick of dynamite to emphasize the importance of my decision.  I considered the promotion scaremongering then, and I still do.  I would have hoped that the leopard might have changed it spots.  This stuff seems just plain wrong.  Please, some physician, any physician– help me understand why I should not believe this to be a badly misleading advertisement if not unethical ?  Use the comment section below so others can be convinced as well.  I very much want your advice so I can make any appropriate apology that is indicated.

• Finally, but certainly not least, in the marketing I have received personally, I was not told how or why I was targeted.  In the medical business, we call that failure to give complete informed consent.  Financial conflicts of interest have always been with us in medicine.  We have dealt with it (not very successfully in my view) by worshiping the goddess of honest transparency and disclosure.  I am not seeing that here.  All bets are off.  It is back to caveat emptor–  let the patient beware?   I ask again as a patient, “who is on our side?”

Today in Louisville and obviously all around the country, your personal medical information is being sold or used with your name attached to it for someone else’s private interests.  Maybe it is not yet illegal because the companies involved call themselves “partners” to justify the sharing.   I don’t know about you, but I don’t want to have any hidden partners involved in my health care.  The emphasis on electronic medical records makes it easier to share, or for that matter, steal your personal medical information.  Are there other reasons why the practices described by Mr. Galewitz are wrong?  Why might they be acceptable?   If you have personal knowledge of other examples of loss or abuse of medical privacy in Kentucky or elsewhere, please also leave a comment, or contact me privately.  I will not reveal your identity. Your email address does not appear to the public in a comment.  You can be provocative (I want to be!) but be civil.  If there is interest, I will elaborate, add, or respond.

Peter Hasselbacher
Feb 6, 2012

2 thoughts on “Loss of Medical Privacy? Is that OK?”

  1. Actually, I already knew the answer to my rhetorical question above, “Are we so easily manipulated by advertising?” The answer is, “of course we are!” Charles Duhigg Had an interesting piece in yesterday’s New York Times Magazine entitled,” How Companies Learn Your Secrets.” He Used Proctor and Gamble, and Target as examples of the spectacular successes achieved by data collection and mining. The example from Target was identifying pregnant women early so they could be pitched items they did not know they needed. My basic premise is now proved: Medicine is sold like soap powder.

  2. Confirmation that Louisville hospitals are mining our doctor’s records.

    A reader conveyed to me today their experience with Norton Hospital mining the medical records of one of their employed physicians. The individual visited their Norton private physician and was tagged with a new diagnosis that would not have been known to the Norton system. Shortly thereafter, the “patient” received a letter from Norton Hospital, not their physician, advising of a seminar that would be of interest to them given their recent experiences. The individual was outraged that their personal medical information was leaked to a marketing campaign. One can only imagine what sort of “education” or “services” were going to be promoted. The correspondent is now reluctant to share information with their private physician. What a disaster for the integrity of physician-patient relationship! To me the mining of doctors office records takes the practice of mining to a new low. This gold mine of information for hospitals and their business partners is a direct consequence of physician employment by hospitals. Of course, the Louisville business community which has linked its future to profits from healthcare will look at this in a different light. How do you view it?

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