Archive for the 'Self Help' Category
February 6th, 2010 by Trisha Torrey
While Congress continues its monkey shines, American patients are continuing to get substandard, too-expensive healthcare, or no healthcare at all. We are getting sicker, and dying, because we can’t get decent care.
However, if you think this post is going to be a call to action for Congress – think again. While I am a firm believer in healthcare reform, and while I firmly believe we Americans deserve universal care – I also know that if you are already sick, or if you get sick today or tomorrow, or even next year, then healthcare reform isn’t going to help you anyway.
The one BIG benefit to all this healthcare legislative brouhaha, no matter what the outcome so far, is that it has forced us patients to realize that Marcus Welby has left the building. The paternalistic, omnipotent doctor-as-God who actually cared about our medical outcomes has become an endangered species — one most of us will never meet in our lifetimes. Healthcare reform discussions have made this very clear: American healthcare is not about health or care. It’s about sickness and money.
So what have we learned?
That in order to get the good, decent care we patients deserve, we’re going to have to take matters into our own hands. Yes — US. WE PATIENTS are going to have to do it for ourselves. We need to be EMPATIENTS (empowered patients.) It’s a shift in mindset that those among us who are smarter and more attentive are realizing isn’t a choice. If we want decent medical care in the United States (or, it seems, in most countries of the world) — we must make this shift in our thinking.
I hear people poo-pooing the use of the term “empowered.” They don’t like it because to them, it suggests that someone must GIVE us power.
I don’t see it that way. I see “empowered” as something we take on ourselves. We take command of our care. We take responsibility for acquiring the information we need, then making decisions for ourselves. We do that with a variety of resources, including physicians, other patients, and media information sources like the Internet, libaries and others.
If you think about it — that’s an entirely different way of accessing healthcare than most of us are used to. It says that, in effect, we will no longer allow healthcare to be done TO us or FOR us. Instead we will demand it be done WITH us.
That means it’s a whole new type of healthcare reform.
In fact, it’s PATIENT REFORM.
Are you ready to take up that cause for yourself and your loved ones? There’s no argument over money here… it’s simply a recognition that if we are going to get the health and medical care we want and deserve, we are going to have to make it happen ourselves. It’s an approach to getting the right diagnosis, the right treatment, staying safe, and making sure you don’t lose your health because you can’t afford to access care. It’s collaborative, research based, and helps us advocate for ourselves.
Here are some places to begin:
• What’s an Empowered Patient? (or anything at the About.com Patient Empowerment site.)
• You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Health Care You Deserve)
• E-Patients.net (e-patients and emPatients describe the same thing – e-patients does not mean you need to understand electronic media.)
• The Society for Participatory Medicine
These resources link to the dozens of other resources you’ll need, too.
Yes — this is it. The beginnings of PATIENT REFORM. Let those in Congress, the ones who have cadillac healthcare plans and don’t really understand what the rest of us deal with continue their bickering and corporate *ss-covering. Let them continue to kow-tow to special interests who are more about making sure they keep their corners of the healthcare money pie, with little or no regard for patient outcomes.
I declare 2010 to be the Year of the EmPatient! Empowered, participatory — finding far better outcomes than we ever could by depending on Congress or someone else to — maybe — help us out.
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January 7th, 2010 by Trisha Torrey
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.
Do you?
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October 16th, 2009 by Trisha Torrey
Have you ever been frustrated trying to get copies of your medical test results? It may be because there is an existing law that says you can only get them from the doctor or other provider who ordered them for you.
That law is yet another example of how patients are excluded from being allowed to take responsibility for their own healthcare. Further, it is one more area of healthcare that has, in some ways, become dangerous. The law exists because someone’s protective wisdom says we patients are either 1. not smart enough to handle the results ourselves or 2. need to be protected from bad news until a doctor can explain the results to us. Studies have shown that 7% of all test results that reflect bad news that require a treatment are never delivered to patients (pause… and think about that for a moment….)
It is vitally important we cut out the middleman here!
You now have the opportunity to affect a change — by simply letting the Health Data Rights group know you support them. I received this email today. I have replied with a resounding YES I SUPPORT YOUR EFFORTS and I hope you’ll do the same.
This email must be sent by Monday, October 19, 2009.
You can send your supporting email to: action@healthdatarights.org Put “Consensus Letter” in the subject — and make your opinions known.
Change The Rules and Get Your Labs
We are writing to share a timely opportunity to put HealthDataRights into action! On Tuesday, October 20, the Health IT Policy Committee at ONC is holding a hearing regarding CLIA laws and access by consumers to their own test results. We have a unique chance to speak with one, resounding voice that the federal barriers to patient access to test results should be removed. Dr. Phil Marshall of WebMD will be testifying at the hearing, and he will be presenting the linked consensus letter http://www.healthdatarights.org/pdfs/CLIA-Letter.pdf that provides background on the issue, recommends two common sense ways the federal laws can be changed to allow greater access, and the benefits of making those changes. This letter has been vetted by some of the top health data experts and health data privacy lawyers. Here is a summary of the letter and what we’re asking you to do:
ISSUE: Federal regulations under the HIPAA Privacy Rule treat test results as a special case, separate from other protected health information. CMS has issued regulations that further state that results can only be delivered to “Authorized Persons”, which as it is currently defined does not include the patient who is the subject of the test.
PROPOSED CHANGE: We propose simply eliminating the special treatment of test result data, and have it be treated under HIPAA just like other protected health information. We also propose that Authorized Persons explicitly include the patient (upon request by the patient)
BENEFITS: While these changes do not address the state laws in a small number of states that further restrict access to test results, they remove substantial federal barriers to data access. It is unlikely to cause any harm because, under HIPAA, providers and labs generally would have up to 30 days to respond to the patient’s request, providing them great flexibility in how and when they deliver the test results. Also, because so many clinically significant test results (approximately 7%) are never reported to the patient, increased access can help ensure that test results aren’t lost to the ether . Third, because approximately 14% of labs and other tests are repeated because prior results aren’t available, making test results more available to consumers can help reduce this duplication and related costs. Finally, the explosion in health management applications and services that could make use of test results have the potential to help consumers better manage their health, make more informed health decisions, and help lower costs.
CALL TO ACTION:
STEP 1: Send an email by close of business Monday, October 19, with the following information:
Your name and, if you choose, your organization & your stance on this letter:
-I support the letter and wish to be listed as a co-signer
-I support the letter but do not want to be listed
-I don’t support the letter, and why
STEP 2: Blog about this issue. Include stories, data and stats. Let’s generate some real energy around making this change! You can also comment on the new healthdatarights blog.
Note the letter can be found here [http://www.healthdatarights.org/pdfs/CLIA-Letter.pdf]
Initial signers:
Dr. Phil Marshall, WebMD
Dr. Daniel Sands, Harvard Medical School
Jamie Heywood, PatientsLikeMe
Dr. David Kibbe, The Kibbe Group, LLC
Nate McLemore, Microsoft
Adam Bosworth, Keas
Dave deBronkart, E-patients
Dr. Roni Zeiger, Google
Colin Evans, Dossia
[email action@healthdatarights.org ] to join.
PS: Forward this to your friends and don’t forget to endorse healthdatarights at http://www.healthdatarights.org/
This email must be sent by Monday, October 19, 2009. You can send your supporting email to: action@healthdatarights.org Put “Consensus Letter” in the subject — and make your opinions known. It will take you only one minute — vitally important — so please participate.
