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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.


Patients – The Invisible Stakeholders

The Myth of “Doctors Are Patients, Too”


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Making Integrative Choices – Complementary and Alternative Medicine

(as published in the Syracuse Post Standard, June 21, 2011)

Many migraine sufferers and patients with back pain choose acupuncture to relieve their pain. Breast cancer patients are finding improved outcomes from meditation as they go through chemotherapy. Both acupuncture and meditation are considered “complementary” therapies, as are yoga, reiki, therapeutic massage and similar therapies.  They don’t replace traditional medical treatment – they supplement it.

You might take echinacea to help fight a cold, or glucosamine to relieve knee pain.  These and other herbal supplements like ginseng or fish oil are considered “alternative” remedies, and are sometimes chosen in place of pharmaceutical drugs your doctor might prescribe.

Of course, most of us who choose complementary or alternative therapies do so without our doctors knowing about it.  In fact, when we visit the doctor and are asked what medicines we have been taking, some of us intentionally withhold that information. We don’t want our doctors to be upset with us.

That can be problematic and may even be unnecessary.  More and more doctors are recommending certain CAM (complementary and alternative) treatments for their patients.  Some medical practices are evolving into “integrative” practices where treatments are proposed based on what they believe will be helpful, regardless of whether it’s considered traditional medicine, or CAM.

Integrative medicine combines the best of both worlds of treatment approaches. If a CAM therapy can be useful, it may be recommended.  But pharmaceutical drugs and surgeries will be options, too.

We patients don’t really care what a therapy is called or who developed it. We just want something that works.  Unfortunately, not enough of our Western, traditionally trained doctors know enough about Eastern, complementary and alternative therapies and therefore won’t recommend them.  Further, the doctors who know the least may be very vocal and intimidating about their disdain for the ones we might like to try.

If you have interest in CAM therapies and are in search of a new doctor, be sure to inquire about a doctor’s willingness to discuss or prescribe the types of therapies you are interested in as you make your first appointment.

If you like the doctor you have now but so far he has been unwilling to discuss integrative therapies, then ask if he will partner with you to learn more about them. If he says no, then it may be time to find a new doctor, one who is willing to explore possibilities for improving your health through integrative care.


What is CAM?

CAM Controversies

Why Won’t Health Insurance Pay for CAM?

How to Talk to Your Doctor About Complementary and Alternative Medicine


Want More Patient Empowerment?
Find Hundreds of Articles at:

Every Patient’s Advocate

About.com Patient Empowerment

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Patient Empowerment Tips


AdvoConnection Gets Ready to Launch – Outreach to Patients

Update on this post:  AdvoConnection is launched!  Patients are being helped, and patient advocates are ready to help you.  Learn more at:  www.AdvoConnection.com.


Hard at work we’ve been!  And AdvoConnection, a dream of mine for several years, is getting ready to launch.

Since beginning my advocacy work almost five years ago, and being highly visible on the web, I hear from desperate patients on an almost daily basis:

  • They cannot get an accurate diagnosis, know they need treatment, and need someone to help them find the doctors, or get the tests, that can help them.
  • They are seeing too many specialists who aren’t coordinating their care.  They need someone who will take a look at their reams of medical records to help them sort out their treatment.
  • They are having trouble with their insurer, who isn’t paying as promised, or who is denying them care.
  • They have received doctor or hospital bills that they can’t sort out or decipher.  Or they believe they have been billed for services they did not receive.  They’ve read that up to 80% of hospital bills are incorrect, and they want someone to help them negotiate with whomever has billed them.
  • I hear frequently from adult children of elderly parents, perhaps living in a different location, who need assistance for their parents, either to help them find a nursing home, or for eldercare or home health care.
  • The biggest heartbreakers are the parents who have run into brick walls trying to help their children.  Or the left-behind person who lost a loved one to a medical error.  They need to know who to turn to — an advocate?  a lawyer? to get the support they need.

Now you can see why I wanted to develop AdvoConnection.  It is a service for matching patients to the help they need in the form of patient advocates, patient navigators, billing assistance and other forms of medical system assistance that will help them navigate the waters of our dysfunctional health care system.

There are two aspects to this new site and service:

AdvoConnection for Patients www. AdvoConnection.com – will launch October 1.  Patients will be able to search for an advocate or navigator by location and service provided — at no cost to them.  They will have the information they need to contact that advocate to inquire more about their services.  It’s a directory type service that will help patients and caregivers find the help they need.

Any patient or caregiver who thinks s/he might need patient advocacy assistance can be added to the email list to be alerted when the site goes live (or, if you read this after October 1, 2009, go directly to the site itself.)

AdvoConnection for Advocates http://members.AdvoConnection.com – provides advocates and navigators will the interface to be a part of the directory for patients described above.  It also provides additional business services such as marketing assistance,  and a forum for connecting with other advocates.  By early 2010, it will also provide them with access to an ask-a-doctor service, and other services they may seek to help them grow their advocacy businesses.

Any patient advocate interested in participating with AdvoConnection may apply for membership through that site:  http://members.AdvoConnection.com

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About.com Health is All a-Twitter

If you thought social networking was only for kids, Gen Web-ers or geeks, then think again.

Social networking has become a great source for finding people who can help you improve your health, or your medical care.

socnetlogos1 If you aren’t sure what I mean by social networking, then you’ll recognize it by other names you have heard, like FaceBook, mySpace or Twitter.

Last month I asked who is using these websites to learn more, and many of you voted in my poll.  But now it occurs to me that for those of you who don’t, you may be missing out on some solid information that can move you forward in your quest to get better healthcare.

So here’s some background information on getting started with social networking.

And, as you may know, I am the patient empowerment guide at About.com — and learned recently that many of my About.com Health colleagues are using Twitter to help their readers, too.  So I’ve put together a list of my About.com Health Twitter colleagues for you to check out.

Do you Twitter?  Do you have a page at Facebook or any of the other social networking sites?  If you’re willing to pitch into the conversation and share what you’ve learned, then please share your ideas – and your IDs, too.

Want more tools and commentary for wise patients?
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