July 8th, 2010 by Trisha Torrey
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.
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June 4th, 2010 by Trisha Torrey
The journal Health Affairs reports on a study that finds Evidence That Consumers Are Skeptical About Evidence-Based Health Care.
According to the abstract,
We found many of these consumers’ beliefs, values, and knowledge to be at odds with what policy makers prescribe as evidence-based health care. Few consumers understood terms such as “medical evidence” or “quality guidelines.” Most believed that more care meant higher-quality, better care. The gaps in knowledge and misconceptions point to serious challenges in engaging consumers in 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.
That’s evidence we all understand.
PS – think this is blown out of proportion? See what real patients have to say.
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April 5th, 2010 by Trisha Torrey
I have been remiss… not posting for two months… and plead the fact that there just are not enough hours in the day! Of course, I’ve kept up with blog posts at About.com - all the commentary about healthcare reform, new hiccups in the system we patients must deal with and more. But yes, this, my personal blog, has been neglected. Apologies.
One of the things that has been keeping me busiest (as you can imagine) is talks about my book, book signings and interviews. It’s been fun so far! So I thought I’d share some links to videos, podcasts and more.
- I had fun talking to Dave Bullard from our local NPR station, WRVO about You Bet Your Life! You can listen to the podcast here. You’re welcome to listen to the entire conversation! But if you want to hear just the section about You Bet Your Life, then you’ll find it begins right at 33 minutes and runs a total of 5 minutes.
- My chat with Kathleen Slattery-Moschkau for her syndicated weekend radio show was a blast, too! We were able to cover quite a bit more ground than my conversation with Dave — I thank Kathleen for her enthusiasm about You Bet Your Life! Please do listen to this podcast because it will give you quite a bit of perspective about why you must take control of your own healthcare.
Great fun at book signings, too:
- At Creekside Books in Skaneateles, NY – great questions from the audience and many thanks to both the owner, Erika Davis and Laura Ponticello from Laura’s List of Books for Women. They made my book launch just perfect!
- A big thanks to Marie Kulikowsky from Barnes & Noble in Dewitt, NY for handling what will be two book signings! Yes — in an example of some of the most marvelous timing, the Syracuse Orange NCAA basketball game was scheduled for the exact hour as my book signing (hey! I got there first!) I emailed those on my list and told them we would reschedule the basketball game. Afterall, I have a pretty good sense of what my friends’ priorities are
— however — about two dozen people showed up anyway – including friends Leslie Rose McDonald and Cindy Masingill — here are the three of us:
….. and yes…. we have rescheduled for May 6th, 7 PM at Barnes & Nobel, Dewitt.
- Thoroughly enjoyed meeting so many people and answering so many great questions at the University of South Florida / Sarasota Lifelong Learning, too. Truly engaged emPatients — a real pleasure.
| Centered on Syracuse: How Trisha Torrey found a new career |
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So at least you know I haven’t been snoozing…. I do want to sell books, but honestly, I’m making next to nothing on those books. More than that, I want you to be an emPatient, too… it’s important. Especially knowing the road healthcare reform will take us down.
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