Archive for the 'Medical' Category
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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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.
September 18th, 2009 by Trisha Torrey
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.
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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
