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Engage with Grace

Oct 29, 2010• 4

By Alexandra Drane

This is the full text of Alexandra Drane's talk about Engage with Grace at TEDMED. I'm so proud of Alex for what she's done and her talk was outstanding–Matthew Holt

So when I heard that I was going to be speaking with all of you about end of life, I was a little sad at first…even though end of life is an obsession of mine….because TedMed is such a sexy event, and speaking here is such an honor. I wanted to talk with you about something like vitality – feeling alive, being empowered, taking life into your own hands…but then it hit me… that’s what end of life actually is – that’s what it can be when it’s done well.

But … It’s not usually. 70% of people want to die at home, only 30% do.

Here’s another stat you might not have thought about recently – You only die once. Think about that for one second – You only die once. Not my words – Atul Gawande’s in his incredible essay on end of life – ‘Letting Go’– which I am now declaring as mandatory reading for each and every person attending TedMed.

End of life in the US has somehow failed to become personal. It’s like this thing we put on a shelf and ignore. And getting what you want at end of life has become synonymous with filling out forms and getting waivers and going to some lawyers office where you pay a lot of money and get excited when you get to keep the pen.

But that’s not what it’s about. Not at all. Let me tell you a story.

Once upon a time there was this extraordinary woman named Za – short for Rosaria. Za was first generation Italian, breathtaking to look at, driven to become a pharmacist – the first in her family to go to college – and of course she was also human…She loved to enjoy…spending money she didn’t always have, generous to a fault. She was madly in love with her husband John and her two year old daughter Alessia, the apple of her eye. Deep within Za welled this enormous sense of joy – a deep gratitude for the life she had. As it turned out, deep within her also lived cancer – and not just any cancer – but the terrible and unforgiving brain cancer Glioblastoma – described by one of her surgeons as whip cream in a sponge – virtually impossible to eradicate. The seven month battle Za waged against her illness was a mighty one – she endured two massive brain surgeries, radiation, chemotherapy, all the related humiliations – but the cancer didn’t really care.

Health Insurance and Life Expectancy

Oct 28, 2010• 22

By JOHN GOODMAN, PhD

Did you know that Hispanic Americans live longer than non-Hispanic whites? If that doesn’t knock your socks off, consider this: American Hispanics are three times as likely to be uninsured as non-Hispanic whites.

If you’re still not blown away, maybe you haven’t been following the twists and turns of the health policy debate. As I wrote at my blog the other day, the Centers for Disease Control (CDC) discovery that Hispanics (one-third of whom are uninsured) have a life expectancy that is 2 1/2 years longer than whites (90% of whom have health insurance) makes mincemeat out of the oft-repeated idea that the uninsured get less health care and die earlier than everyone else.

In support of the conventional wisdom, for example, the Physicians for a National Health Care Program (PNHCP) went so far as to claim that a whopping 45,000 people die every year because they are uninsured. That figure, repeated as though it were unquestioned fact by President Obama and most of the health care media, is almost as large as the number of American soldiers killed in the entire Vietnam War!

Families USA went so far as to make the astounding claim that 6 people die every day in Florida because they are uninsured. Eight die every day in California; and 25 die in New York. In Texas, the report implies that more people die every two months from lack of health insurance than the number killed at the battle of the Alamo (counting only losses on our side, that is). Nationwide, says the PNHCP, an uninsured person dies every 12 minutes.

Health 2.0 Developer Challenge Code-a-thon Finalist: Team Transpera Health

Oct 28, 2010

By BIANCA GROGAN

Team Transpera Health, led by Cathy Huang, introduced software that will enable consumers to make healthcare provider and procedure decisions based on costs and quality. The team utilized databases from the CMS Medicare Physician Fee Schedule and CAHPS Hospital Survey as the basis for calculations. Judges at the Code-a-thon noted the concise and consumer-friendly aspects of the application.

Alexandra Drane doing Engage With Grace at TEDMED

Oct 28, 2010• 2

By Matthew Holt

Just one photo from TEDMED, a really fascinating conference where I’ve been this week (courtsey of RWJ). This is Alex Drane telling Za’s story and presenting Engage with Grace. She was remarkable.

Privacy Paradigms: From Consent to Reciprocal Transparency

Oct 28, 2010• 1

By FRANK PASQUALE

Computational innovation may improve health care by creating stores of data vastly superior to those used by traditional medical research. But before patients and providers “buy in,” they need to know that medical privacy will be respected. We’re a long way from assuring that, but new ideas about the proper distribution and control of data might help build confidence in the system.

William Pewen’s post “Breach Notice: The Struggle for Medical Records Security Continues” is an excellent rundown of recent controversies in the field of electronic medical records (EMR) and health information technology (HIT). As he notes,

Many in Washington have the view that the Health Insurance Portability and Accountability Act (HIPAA) functions as a protective regulatory mechanism in medicine, yet its implementation actually opened the door to compromising the principle of research consent, and in fact codified the use of personal medical data in a wide range of business practices under the guise of permitted “health care operations.” Many patients are not presented with a HIPAA notice but instead are asked to sign a combined notice and waiver that adds consents for a variety of business activities designed to benefit the provider, not the patient. In this climate, patients have been outraged to receive solicitations for purchases ranging from drugs to burial plots, while at the same time receiving care which is too often uncoordinated and unsafe. It is no wonder that many Americans take a circumspect view of health IT.

Privacy law’s consent paradigm means that, generally speaking, data dissemination is not deemed an invasion of privacy if it is consented to. The consent paradigm requires individuals to decide whether or not, at any given time, they wish to protect their privacy. Some of the brightest minds in cyberlaw have focused on innovation designed to enable such self-protection. For instance, interdisciplinary research groups have proposed “personal data vaults” to manage the emanations of sensor networks. Jonathan Zittrain’s article on “privication” proposed that the same technologies used by copyright holders to monitor or stop dissemination of works could be adopted by patients concerned about the unauthorized spread of health information.Continue reading…

Confessions of a Health Literacy Expert

Oct 28, 2010• 14

By HILARY SELIGMAN, MD

I have a patient who I will call Antonia.

Antonia is in her early 70’s. She came to the United States from Guatemala many years ago, but never learned to speak much English. This doesn’t cause her much of a problem; her community is small and tightly-knit, so she doesn’t have much need to speak English in her home or her neighborhood. And she has a large family—children and grandchildren and great-grandchildren—who live close by.

Antonia is one of my favorite patients. We communicate in different languages, and taking care of her is a series of endless frustrations. But I love her contradictions.

She seems so little when she sits in the chair in my exam room, feet up on the bar supporting the chair’s legs, her body folded up around the purse clutched tightly in her lap. But when she talks, she shines; she is larger than life. We enjoy ourselves. I like her, and I like being her doctor.

Here is Antonia’s medication list:

For diabetes:
Metformin 1000 mg: 1 tablet 2 times daily
Glyburide 5 mg: 1 tablet 2 times daily

For pain associated with neuropathy (a complication of her diabetes):
Gabapentin 300 mg: 1 tablet 3 times daily

For high blood pressure:
Hydrochlorothiazide 25 mg: 1 tablet 1 time daily
Benazepril 20 mg: 1 tablet 1 time daily

To protect from heart attacks:
Aspirin 81 mg: 1 tablet 1 time daily

For a recent bout of depression:
Escitalopram 10 mg: 1 tablet 1 time daily

For heartburn:
Omeprazole 20 mg: 1 tablet daily

For osteoporosis:
Os-cal 500mg: 1 tablet 2 times daily

For cough of unclear etiology (maybe asthma?):
Albuterol Inhaler: 2 puffs four times daily as needed for cough

Despite these ten medicines on her official list, Antonia’s blood pressure is often too high when she comes in to see me. Her blood sugar is way out of control. And she has had a cough now for many months. I don’t know why she has a cough, because she has not completed most of the tests I have ordered for her. All of this troubles me.

Saying No to Mammo

Oct 28, 2010

By DAVID WILLIAMS

This month’s Narrative Matters in Health Affairs (Why I Don’t Get Mammograms) is among the best I’ve read. Author Veneta Mason is a late 50s nurse practitioner whose sister died from breast cancer. Yet she’s consciously decided not to get mammograms anymore because she doesn’t believe early detection makes successful treatment more likely or extends life. To summarize her arguments:

Cancer is horrible but metastatic breast cancer is just as treatable and deadly whether or not a patient undergoes routine screening. Even though she accepts her risk may be significantly higher due to her sister’s illness, it doesn’t matter if screening doesn’t make her treatment better or life longer
It’s important to have a primary care physician who accepts her reasoning about screening

The Shame of Malpractice Lawsuits

Oct 27, 2010• 13

By PAUL LEVY

This posting is not about tort reform. It is not about defensive medicine (e.g., MDs taking too many tests to avoid the chance of lawsuit.) It is not about controlling costs or improving the quality of care. It is not even about whether malpractice lawsuits are fair. It is about the emotional effect on a doctor when he or she is sued for malpractice.

A friend of mine (I’ll alternate genders to help maintain confidentiality) recently found herself in this situation. By any measure, this person is an excellent physician. She has impeccable clinical judgment when it comes to both diagnosis and treatment. She has superb interpersonal skills and bedside manner. She is highly respected by her peers, by the nurses, and by all who know her.

Recently he found himself as a defendant in a malpractice lawsuit. The details and merits of the case don’t matter all that much. The patient had been under his care for many, many years and was always satisfied with the quality of care offered. After the patient died, the patient’s children sued.

Even though she knew that she had done nothing wrong, my friend’s main emotional response to the lawsuit was that she was ashamed. She did not want anyone to know about the case — whether colleagues in the hospital or social friends. I was stunned. Without knowing any of the evidence in the case, I was confident that this doctor had done her best in treating another human being and would be appalled to think she had done anything to create harm. I also knew this person to be as well trained and well intentioned as anyone I could imagine.

And, yet, he felt shame in being named as a defendant in a case that accused him of negligent treatment. As I talked to other doctors, I learned that this was a common reaction to such lawsuits. Another friend talked of the scars left from a case 20 years ago. He was found not to be at fault, but he could still vividly recall the weeks of shame he felt while the case proceeded.

How Come Comparative Effectiveness Research is All the Rage?

Oct 27, 2010• 18

By KENT BOTTLES, MD

Comparative Effectiveness Research (CER) is suddenly a hot topic at all the health care conferences. How come? Everybody agrees that we have to decrease per-capita cost and increase quality. Why? Government programs like Medicare and Medicaid foot more than 50% of our nation’s health bill, and if everything stays the same these programs will go belly up (bankrupt) in 8 years. Big problem.

Health and Human Services (HHS) has defined comparative effectiveness research as conducting and synthesizing research comparing the benefits and harms of different interventions and strategies to prevent, diagnose, treat, and monitor health conditions in “real world” settings. In other words, CER is figuring out what treatments, tests, and drugs work and which ones don’t work.

John E. Wennberg spent a whole career at Dartmouth studying American medicine, and he comes to the startling conclusion that 60% of Medicare is spent on supply sensitive care (physician visits, consultations, imaging exams, and hospital and ICU admissions) and 25% on preference sensitive care (PSA tests, mammography, and elective surgery). Although we assume that this care is based on solid scientific evidence, Wennberg states that “medical science is virtually silent on such matters” as how often to see a patient, what test to order, and whether to admit a patient to the hospital or ICU. Some evidence based medicine experts state that only about 20% of what physicians do is based on sound science.

SureScripts, A Defacto NHIN

Oct 26, 2010• 10

By JOHN MOORE

Yesterday in New Orleans, SureScripts announced a new line of business: Clinical Interoperability. Leveraging their existing ePrescribing solution platform, currently serving over 200K physicians nationwide, and combining it with the technology stack of messaging solution provider Kryptiq, SureScripts will offer providers, EHR vendors, HIEs and other stakeholders the opportunity to securely share clinical information across town, the state, a region and the country. In this combination, SureScripts will provide the rails and Kryptiq will address the last mile of connectivity. This announcement has some pretty big implications for the HIE market. Chilmark was briefed prior to this announcement by both SureScripts and Kryptiq, following is what we learned.

Details:
SureScripts primary focus has been to provide the network that would support physicians transition to ePrescribing. Therefore, SureScripts has been focused on transmitting NDP data and not clinical notes. SureScripts got into the transmission of clinical summaries from one of its larger customers, MinuteClinic wanted to send clinical summaries of patient visits directly to primary care providers. In the past year SureScripts has facilitated the movement of over 0ne million patient summaries for MinuteClinic to primary care physicians using CCR. Seeing an opportunity, SureScripts sought a partner that could take this capability to the next level.

Kryptiq, a company profiled in Chilmark’s forthcoming HIE Market Trends Report due out next month, can be characterized as vendor of HIE capabilities that allow for the organic growth of an HIE without the overhead. Kryptiq has worked behind the scenes for a number of EHR companies to provide secure, structured messaging services within these EHRss ecosystems of customers connecting them to one another as well as to other systems, including SureScripts to facilitate care coordination.