When it comes to TV and video, Al Roker provides one of my favorite quotations:
“They say the camera adds 10 pounds. OK. So I figure I must be standing in front of 10 cameras.”
Oh, yes, Al. I know how you feel….
However — I’ve decided to come out of my video-avoidance closet to share the following with you all.
First — my excitement at the invitation a week ago to appear on MSNBC to speak to a problem that I actually cited a few years ago – that July is the worst month of the year to be hospitalized. Why? Watch and see!
So that’s the first one. But if I’m going to jump in to the world of video, I might as well do it with both feet. Many of you know that I am brought in to speak at various conferences and meetings across the US and Canada. I enjoy speaking! So in my attempts to do even more of it, I’m told I need to have a professional video made. So, yes, I finally bit that bullet, too, and have uploaded the online version of the opening here.
It’s not like I’ve never done TV before – I have done local TV on a number of occasions. And broadcast isn’t the problem – ferheavensake, I have hosted a radio show for 4+ years! But video, in general, has just always been a step I’ve avoided.
In the five years I’ve been working on patient empowerment and patient advocacy, I’ve been thrilled to have been quoted in the likes of the Wall Street Journal, US News & World Report, Forbes, Fox, NPR, PBS and others…
But now I know I have arrived — because O Magazine came calling! Sure enough — an article called Someone on Your Side – it’s about hiring a patient advocate to help you through a medical problem. Because I am the founder of AdvoConnection and work extensively with private patient advocates, I am one of the people quoted in the article.
I join three of my distinguished (and very talented!) colleagues. Hari Khalsa is the Health Whisperer. One of her patient-clients who was being treated for thyroid cancer just could not get her doctors to coordinate her care. Hari stepped in to make sure the care was coordinated and Tracy, the patient, got what she needed.
Gail Gazelle is cited in the article, too. Gail owns a private advocacy business called MDCanHelp. Gail points out that too often doctors just don’t have the time to devote to care coordination as they should. Private patient advocates step in to fill the gap.
And Ken Schueler, who has been coordinating care for cancer patients for many years, is quoted, too. Ken provides some advice for finding good health information online about diseases, clinical trials and more.
The most important information for you? When you read the article, you’ll realize how important it is you find an advocate to help you. Although the Patient Advocate Foundation might work for you if you can’t afford an advocate (they handle insurance and claims issues) — if you need care coordination and help with your medical decisions, then you must give serious consideration to hiring a private patient advocate.
So how do you find these people? Simple: a directory of advocates who have been reviewed for their expertise, and work closely with patients like you everyday: www.AdvoConnection.com.
Private patient advocates provide you with improved health outcomes AND peace of mind.
We found many ofthese consumers’ beliefs, values, and knowledge to beat odds with what policy makers prescribe as evidence-basedhealth care. Few consumers understood terms such as “medicalevidence” or “quality guidelines.” Most believed that more caremeant higher-quality, better care. The gaps in knowledge andmisconceptions point to serious challenges in engaging consumersin evidence-based decision making.
It goes on to explain how they did the study, how they drew their conclusions — and the bottom line is that we patients are making poor and expensive choices, we patients need to begin engaging more in our own care decisions, and therefore, and until we do, we will continue to be at fault for the huge cost of healthcare.
As their next step, Health Affairs developed a communication toolkit. But – just as every other group that tries to analyze patient behavior has done — it was developed FOR patients, to be given TO patients (through their employers) — but nobody worked WITH patients to develop it.
However — the study, the toolkit and the journal report have completely missed the boat on why patients don’t believe evidence. In fact, it has very little to do with evidence at all.
Here’s why:
Because the American healthcare system is based on profits — and the less engaged we patients are in our own decision-making, the more money there is to be made. As long as someone can make money from our need for care, we patients will continue to be manipulated so they can make their money. It’s not about evidence. It IS about maintaining and increasing profit.
Some examples:
1. Providers are not paid to talk to us. In fact, they can’t wait to get us out the door. Their goal is to make as much money they can from us — which is fair — but the system says that they have to do that by seeing as many patients as they can in their day. More patients means less time per patient. That approach, of course, is driven by payers. But how are patients supposed to discuss options with someone who won’t spend time with them?
My perspective as a patient: I have symptoms. I am scared about what they mean. The doctor won’t take the time to explain them or answer my questions. He intimidates me, but he’s still the gatekeeper to all my medical needs, so I don’t dare make him mad. I would love nothing more than to discuss options — but exactly who can I have that discussion with?
2. Providers CAN make money by running tests and doing procedures – so they recommend all the tests and procedures they can get away with. Further, they know that the paper trail of tests and procedures may cover their backsides one day if I ever sue. That approach, of course, is driven by payers.
My perspective as a patient: I have symptoms. I am scared about what they mean. The doctor won’t take the time to explain them or answer my questions. He intimidates me, but he’s still the gatekeeper to all my medical needs, so I don’t dare make him mad. When he tells me I have to have a test or a procedure or take a certain drug, I just nod my head because I’m put on the spot. I don’t know the questions to ask, and even if I did, the doctor has left the room before I can even think to ask them.
3. Providers are rewarded by writing prescriptions for expensive drugs. (And don’t tell me that’s no longer legal because we all know it’s still going on — it’s just more covert.) They are paid to speak at dinners, or they get their CME cruises paid for, etc…. Payers may encourage a prescription for a generic, but even that is no longer as true as it once was. They’ve pretty much thrown in the towel – now they just charge patients a larger co-pay.
My perspective as a patient: I have been diagnosed by the EXPERT — the doctor. He suggests I take a certain drug. When the prescription is written for me, as I sit naked in his office, I have no way of knowing what it’s going to cost me when I pick it up… What I do understand is that a few months ago when I asked about a generic I was told that one didn’t exist for what I need. Even if I ask, I’m afraid the doctor won’t be happy with me, and since it took me two months to get this appointment anyway, I just don’t want to rock the boat.
4. Providers own equipment and facilities. They encourage patients to use that equipment and those facilities. MRIs, surgery centers – you name it, physicians own it — OR — they are employed by the people who own the equipment. Those leases need to be paid!
My perspective as a patient: I just know I banged up my knee and the doctor needs to look at it. He tells me he’s sending me down the hall for an MRI. What am I supposed to do — suggest I get an x-ray be done somewhere else instead? Seriously. Suppose he says no and gets mad? My knee hurts today — I can’t wait another couple of months for an appointment with a different doctor!
etc etc etc
Perhaps by understanding our patient perspective on our interface with the system, you’ll better understand the bottom line to why we don’t make the choices that evidence or money suggests we should.
We don’t TRUST the system. And we are AFRAID NOT TO TRUST our doctors. Doctors are the gatekeepers. They are the front line. They are the ones who help us live and who may cause us to die – and we are intimidated.
Until the system shifts to a place where we can be partners, and feel as if our input will be listened to, considered, and respected, then there will be no massive shift in how patients influence their own care decisions, whether for evidence or money reasons, no matter how many communications toolkits are developed.
My regular readers know that I have never been about a victim mentality. I have spent the last 5+ years writing and speaking to patients about getting past these hurdles. If there is anyone engaged in improving how patients approach their care, I’m at the front of the line.
But I’m also not willing to accept the blame being heaped on us patients as if we are children who haven’t yet done what we’ve been told. You can’t flip a switch, tell us we are wrong, and that we are expected to change, when there is nothing about the healthcare system that will allow for that change.
Bottom line — as long as everyone in the healthcare industry is out to make a buck off our patient backs, there will be no improvement on a grand scale. Period.
A couple of weeks ago I posted a flu vaccine commentary and poll after listening to Dr. Dean Edell on the radio. He was talking about people who refuse to get vaccinated. He made the comment that vaccines have been proven effective for decades, and he’s tired of trying to defend them. That if people refuse to get vaccinated, and die — well — that’s just a way to clean out the gene pool.
Readers of the post took offense, calling me arrogant and ignorant. Among them are people who are truly afraid, people who are allergic, people who feel as if they have done their due diligence and have dismissed vaccines (empowered patients!) — and conspiracy theorists.
I wrote a follow up post, citing highly credible sources for all to see, showing why I believe flu vaccines are so important. The bottom line is that the flu is dangerous — both the H1N1 swine flu and the seasonal flu are killers. Vaccines are the only defense we have today (who knows – maybe we’ll have something better in the future?) And the statistics tell us that we have a 591% better chance of dying from the flu than we do dying from the flu vaccine. You don’t have to be a Las Vegas gambler to understand those odds.
I am actually VERY pleased that so many people have given researched thought and consideration to the question – even the ones who disagree with me. However — I must say — I’ve had it up to my eyeballs with the flu vaccine conspiracy theorists…. seriously. And if you are one, I say to you — get a life!
Here are the conspiracy theorists’ arguments. They remind me of a saying I heard many years ago — “Just because I’m paranoid doesn’t mean they aren’t out to get me.” Further – they have violated the first rule of questionable healthcare practices, and that is – Follow the Money.
Here are some of their lines of reasoning, and my comments:
1. Flu vaccine is only produced to make pharmaceutical companies richer. To that I say — don’t be silly. For the cost, personnel and too tiny profits to be made by producing vaccine, pharmaceutical manufacturers would much prefer to put their efforts into producing something that actually makes a worthwhile profit for them. Included is the manufacturing are symptoms relievers — far FAR more profitable in the long run. Why would they want to prevent an illness at very little profit at the expense of bigger profits from medicine that could relieve or fix us?
2. Flu vaccines were developed from African Green Monkeys - and the real intent is to eradicate the population of the earth! This one gets the “give me a break” award on so many counts… First… if the government wanted to eradicate the entire population of the earth, they could do it FAR more efficiently by using, oh, say anthrax or dengue fever – or some other killer. Why would they go to all the trouble to develop something that actually took science? Why not a shortcut, and something cheap to do it?
3. And then I have to ask – why would the government (which government anyway?) want to eradicate the world’s population? If the government eradicated the world’s population, then who would be left to govern? and who would be left to pay taxes to that government? and who would be in charge anyway? (because the government is comprised of people who would get sick, too)…. etc etc….
Sorry — but these theories are just plain laughable. You want a conspiracy? I think there’s a conspiracy to make me waste my time looking these things up — because I do my due diligence, unlike some of my readers.
Here’s the deal — I understand that not everyone wants to be injected with flu vaccines, and even that some must avoid vaccines because their bodies cannot tolerate them. However — for the great majority of us (GREAT majority) — flu shots will keep us healthier — and will keep our loved ones and those around us healthier — than not getting flu shots will.
Further — as reasonable people, we need to understand that unless we have a real concern about negative effects of vaccines, we must accept responsibility for passing possibly deadly flu on to others when we don’t get the flu vaccine. H1N1 or seasonal — they are both killers. I’m not willing to be responsible for making someone else sick, nor chancing that they could die. I would not be able to sleep at night.
The journal Health Affairs reports on a study that finds 
