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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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
