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
August 31st, 2009 by Trisha Torrey
I’ll begin this post by saying that I understand the basics — that many parents of children with autism believe that autism was brought on by vaccines. And that scientific research has over and over again proven that link does not exist.
Then I watched the Dateline / Matt Lauer interviews and exposé, A Dose of Controversy, about where that suggestion came from, profiling Andrew Wakefield, the doctor/scientist who first suggested that link existed, and who is now hailed a hero by many of those parents who still believe in the connection. Also interviewed were two more major players in the argument – Brian Deer, a British journalist who has exposed Wakefield over and over again, and Dr. Paul Offit, infectious diseases expert from Children’s Hospital of Philadelphia, who has written a book called Autism’s False Prophets which lambasts Wakefield’s work.
Matt Lauer pulled no punches in his questioning of any of the three. It’s very clear that the worshipping behavior of these parents who believe that somehow Andrew Wakefield represents the second coming is misplaced. But even more than that – it’s very easy to see how we observers must use the follow the money rule on all three of these men. Perhaps an even bigger lesson has to do with LISTENING.
But we also must remember in the midst of this — that many studies (I can’t find a number, but it was suggested there were at least dozens) — studying, literally, MILLIONS of children — have proven every time (not just some, but every time) that an autism-vaccine link DOES NOT EXIST. Even The Lancet, a highly respected medical journal, the one which originally published Andrew Wakefield’s article about that link, has stated that they never would have published it if they had known how Wakefield’s work had been funded (see below.)
Follow the money (FTM) — it’s the rule that helps explain a lot of the “why’s” in healthcare. Here are examples, as applied to the questions about autism:
FTM explains why Andrew Wakefield would continue asserting that the MMR vaccine causes autism — because he is/was paid in at least two ways to make sure that was clear. First, he was paid at least $750,000 by a company that developed a measles-only vaccine that could have been used as a substitute for the MMR. Now, under suspicion for other (unspecified) charges in his native England, he has set up an outpost in Austin, Texas (have to wonder about the wordsmithing there — Austin and Autism) — but is not licensed to practice medicine in the United States. Parents are paying thousands of dollars to have their children tested for certain gastrointestinal problems possibly related to autism, but it was unclear as to whether any children have actually been helped by Wakefield. Further, outside of parents talking about how wonderful he is, none seemed to be able to pinpoint exactly why — except that he listens.
(All other doctors of every stripe — please take heed of that — HE LISTENS.)
Brian Deer – his FTM is a bit easier to track. He is paid to do his investigating and writing, so finding a goldmine like Andrew Wakefield is job security. It should be noted that Deer also needs the money to defend himself legally. He has been sued a number of times by Wakefield — always unsuccessfully — Deer has always prevailed, able to prove that his allegations about Wakefield were accurate and defensible.
Dr. Paul Offit requires some FTM analysis as well. Beyond the income from his book where he alleges that parents have been scammed by Wakefield for more than 10 years, he is full-on supportive of vaccines – including the fact that he is the developer-inventor of one vaccine. So yes, he makes money as the developer of the vaccine, which seems to be unrelated to autism. Interestingly, he has an expense many would not ever think of — he is forced to pay for bodyguards, because some of those Wakefield supporting parents have threatened his life.
Here are some beliefs I hold, which affect my beliefs about this controversy:
- I absolutely believe each of these parents who has observed their children well enough to say “She was fine, then she got the vaccine, and something happened.” I don’t question that for a minute, because I do believe parents are THAT WELL tuned in to their children.
- I also know human nature well enough to understand why parents cling to any belief that would help them explain something that is otherwise not understandable. As humans, we all want to assign blame. It’s the reason we can’t cope with problems like Hurricane Katrina, or any other mother nature related catastrophe — because there’s really no one to blame. By clinging to the vaccine-as-perpetrator, parents have someone to blame, plus the bonus of a hero in Wakefield. (Plus making Jenny McCarthy a hero — another story for another day.)
- When people are desperate, like these parents with autistic children, they will go to extremes, even when those extremes don’t make sense. To so desperately believe in something that has been disproven in so many ways, and to be threatening the life of someone who truly makes sense — these are moves of desperation.
Combining those beliefs, and having done a brief FTM analysis – we have to look at some bigger picture questions, too. I provide no answers here — I’m just sayin’…
- So what if Wakefield and all these parents are right? What if the MMR vaccine DOES trigger something that causes autism? Maybe it’s not the vaccine itself — maybe the child happened to have eaten something that day, or has another very mild, asymptomatic virus or bacteria in his body — or ? It could be the vaccine in a combination with something else – I do know a genetic link is being studied, too.
- Even if there is a link — how does that change things for the parents whose children do have autism? It doesn’t mean there is a cure. You can’t subtract the vaccine from their bodies. So why would parents put so much energy into their hero-making – at the expense of taking time away from their own children to do it?
- Autism is a “spectrum disorder” — is it possible it’s not just one thing? Is it possible that even though the symptoms and some of the behaviors are similar, that these children really have different disorders — triggered by different things? Whose to say that some forms of ADHD, for example, aren’t really a part of that spectrum? I know there are many discussions of misdiagnosis among both autism and ADHD diagnoses….
Finally — I believe the bottom line here is the fact that NONE OF THESE PROFESSIONALS get the fact that the passion and desperation fuel this fire and that the people who feel the most maligned (the parents who believe in Wakefield) do so because they feel that he LISTENS.
And that is the bottom line for today’s very long-winded post. We all need to listen more because listening, then responding appropriately, will lend itself to compromise and understanding — no matter what the controversy.
I’m listening — what can you tell me that will help explain what I don’t understand?
