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Calendar: Health 2.0 NYC Chapter June 11, 2009 Meeting Announced

This post was submitted by Eugene Borukhovich, of the New York Healthcare Technology Organization – Health 2.0 New York Chapter

The last meetup had a great turnout and we are gearing up to have the 99%
"show-up rate" once again! Please make sure to RSVP and please make it
firm since we have limited seating. Space will be opened up to 55
members but it will be tight so please only breath when you need to 🙂
(Disclaimer: that was not a medical advice).

June Presenters:1. HealthWorldWeb, LLC – Dan Kogan, CEODan will present a private beta launch of our reincarnation MyHealthExperience.comMyHealthExperience helps healthcare consumers identify best resources and providers of healthcare by virtual word of mouth

2. Hello Health – Jay Parkinson, MD + MPHJay does not need any introductions as he is "The Doctor of the Future"Hello Health
is a revolutionary new experience with your neighborhood doctor. They
mix office and online visits to give you personal attention when and
how you want it.

Continue reading…

Hostility Towards Scientists And Jenny McCarthy’s Latest Video

Val Jones, M.D., is the President and CEO of Better Health, LLC. Most recently she was the Senior Medical Director of Revolution Health, a consumer health portal with over 120 million page views per month in its network. Prior to her work with Revolution Health, Dr. Jones served as the founding editor of Clinical Nutrition & Obesity, a peer-reviewed e-section of the online Medscape medical journal. She currently blogs at Get Better Health, where this post first appeared.

I’ve been fairly quiet about Jenny McCarthy’s campaign against childhood vaccinations, partly because Dr. David Gorski has covered the issue so thoroughly already, and partly because of my “do not engage” policy relating to the deeply irrational (i.e. there’s no winning an argument with “crazy.”) But this week I was filled with a renewed sense of urgency regarding the anti-vaccinationist movement for two reasons: 1) I received a personal email from a woman who is being treated with hostility by her peers for her pro-science views on vaccines and 2) a friend forwarded me a video of Jenny McCarthy speaking directly to moms, instructing them to avoid vaccinating their kids or giving them milk or wheat because of their supposed marijuana-like addictive properties.

Anti-Vaccination Views Are A Status Symbol?

I was surprised to discover that some pro-science moms are being mocked by peers who are uninterested in evidence, choosing to believe any dubious source of health information that questions the “medical establishment.” This concerned mom writes:

I am the mother of two young children, and I live in the trenches of the anti-vax woo.  In my circle of about 14 mothers, my anecdotal analysis is that the rate of complete vaccination hovers around 60%.  The mothers in this group are all very well educated, middle-class or affluent, predominantly stay-home mothers. One problem is what they consider reliable sources of information.  They rely on anecdotes and dismiss scientific evidence in part because they are very anti-medical establishment.  The group is self-validating and many shared values (and myths) increase in intensity over time.

Many of the mothers practice “Natural Family Living” which has some appealing aspects, but also harbors elements of a cult.  In this environment, anti-vaccination becomes a very powerful status symbol… I have lost friendships and been partially ousted from this circle because of my views.

This note struck a chord with me, since I experienced similar hostility in the past for voicing my concern about pseudoscience and misleading consumer health information. I was accused of being “paternalistic, narrow-minded, a dinosaur – part of a dying breed, a racist against complementary and alternative medicine, and a Bible school teacher, preaching evidence-based medicine,” insulted for my desire to be accurate about what was known and not known about treatment options, and my expertise, training, and academic credentials were called into question publicly on many occasions. I endured all of this primarily at the hands of someone who supposedly believed in “natural healing” and the “art of kindness” as an integral part of patient care.

I am troubled by the mounting antagonism towards those of us who’d like to use critical thinking and scientific reasoning to learn what we can about medicine and our health. I’m not sure what to do about it except to encourage one another to stand strong for science and reason – to expect all manner of attacks and insults, and to be firmly committed to the objective quest for truth. It shall set us free.

Jenny McCarthy – Inaccurate, Unhelpful And Dangerous Advice

Although I find Jenny McCarthy’s advice and opinions painful to watch, I committed myself to viewing her recent video at my friend’s request. In order to spare you similar discomfort, let me simply summarize what she said so you can get a high level overview of the sort of bizarre and misinformed claims she promotes (feel free to check out the video for yourself).

“Autism is not primarily a genetic disorder, but caused by vaccine-related toxins (including mercury, aluminum, ether, anti-freeze ,and human aborted fetal tissue) and pesticides.”

“Kids get ‘stoned’ by wheat and dairy toxins. Giving them wheat or dairy proteins is like giving children marijuana.”

  • There is currently no evidence that any diet improves or worsens the symptoms of autism spectrum disorders.  In fact, whole grains and dairy products are an important part of a healthy diet for most children.

“Food allergies are like Iran and Iraq. Glial cells (they’re like chef cell) provide food to the neuron kings. Glial cells can turn into Rambo to fight Iran and Iraq. If a child is allergic to everything, the Rambo cells stop feeding the neurons and the neurons starve. That causes the symptoms of autism.”

  • I don’t know what to say about this strange analogy – clearly no science-based information here.

“To treat autism, you need to give your child supplements to fight off the yeast in their bodies. I recommend Super Nathera, Culturelle, Cod Liver Oil, Caprylic Acid, CoQ10, Calcium, Vitamin C, Selenium, Zinc, Vitamin B12, B6, and Magnesium.”

  • There is no evidence of efficacy for any of these supplements in the treatment of autism.

“You need to consult with a DAN! Practitioner.”

  • DAN! Practitioners recommend chelation therapy for the treatment of autism. There is no evidence that chelation therapy has any benefit for children with autism, and in fact, can be fatal.

“Whatever you think becomes your reality. Imagine your child going to his/her prom and he’ll be cured.”

I think it’s pretty clear that Jenny McCarthy’s recommendations range from ineffective (imaginary healing) to harmful (malnutrition related to absent dairy and wheat in the diet, excessive levels of vitamins) to deadly (chelation therapy with DAN! Practitioners). Will mothers watching her new show on Oprah fall for her pseudoscience and poor advice?

I was pleased to see this open letter to Oprah from one concerned mom. Here’s an excerpt:

To me, it is clear that a significant number of people look up to you, and trust your advice and judgment. That is why it is such a huge mistake for you to endorse Jenny McCarthy with her own show on your network.
Surely you must realize that McCarthy is neither a medical professional nor a scientist. And yet she acts as a spokesperson for the anti-vaccination movement, a movement that directly impacts people’s health. Claims that vaccines are unsafe and cause autism have been refuted time after time, but their allure persists in part because of high-profile champions for ignorance like McCarthy. In fact, ten of the thirteen authors of the paper that sparked the modern anti-vaccination movement retracted the explosive conclusions they made due to insufficient evidence. Furthermore, it is now clear that the study’s main author, Andrew Wakefield, falsified data to support these shaky conclusions.

We have come close to eradicating life-threatening and crippling illnesses because of vaccines, but are now struggling to prevent outbreaks because of parents’ philosophical beliefs that vaccines are harmful. Realize this: when someone chooses not to vaccinate their child, they aren’t just putting their own child at risk, they are putting everyone else around them at risk. Diseases with vaccines should normally be of little concern even to unprotected individuals due to herd immunity – with the majority of the population immune, unprotected individuals are less likely to come into contact with the pathogen. Unfortunately, herd immunity disintegrates as fewer people are vaccinated, putting everyone who hasn’t yet been vaccinated at greater risk for infection. Now, the rates of infection by diseases for which we have safe and effective vaccines are climbing, thanks to anti-vaccination activists like Jenny McCarthy.

You reach millions of people everyday and your words and endorsements carry an incredible amount of weight. If you say to buy a certain book, people will buy it. If you do a segment on a certain charity, people will contribute. And if you say that what Jenny McCarthy is saying has merit, people will believe you…

Conclusion

A certain segment of society appears to be emotionally invested in medical beliefs that are not based on science, but rather anecdotes, conspiracy theories, and magical thinking. Those who recommend a more objective method of inquiry may be subject to ridicule and hostility by that segment. Nonetheless, it is important (for public health and safety purposes and the advancement of science) for critical thinking to be promoted and defended. While some celebrities, like Jenny McCarthy, are committed to misinforming the public about their children’s health – parents who recognize the deception are speaking out against it. Perhaps the best way to combat Jenny’s propaganda is to boycott Oprah. Refusing to support the promotion of dangerous pseudoscience may be our best defense.

Nothing Personal

Center for Information Therapy disclaimer: This post was written by Cindy Throop and does not necessarily reflect the views and opinions of the Center for Information Therapy.

-3I agree that getting personal is not productive. But I guess that depends on what you are talking about. The health care system is broken, but it is not the fault of any single person or entity. Getting personal in this sense does not help move things forward.

So, what *is* personal?  How about the information in the pictures below?

This is Regina Holliday’s husband’s most basic – and important – health
information.  It is on display at Pumpernickel’s Deli in Washington,
DC.

Continue reading…

Call for Submissions:

Health
2.0 is working on a new documentary focusing on the experience and
outcomes of patients using Health 2.0 tools and technologies to manage
their health. We are currently looking for both enthusiastic users of
online services and innovative Health 2.0 companies to participate in
this exciting project.

Continue reading…

Kaiser Health News Debuts Today and Features an Important Insight Into a Likely Health Care Bill

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Kaiser Health News (KHN) debuted today and is a critically important addition to America's debate over health care reform.As the media has downsized in recent years, we have lost many reporters who were health care specialists. KHN
will provide news outlets across the country with an important
specialized source of solid reporting from an organization that has
come to be known as uniquely expert and unbiased.In their inaugural issue today, Julie Appleby has an interesting interview with Nancy Ann DeParle, the President's point person on reform.

Continue reading…

Death to Innovators – The Tragedy of Healthcare Innovation

Tragedy

Shreeve

  1. A disastrous event, especially one involving distressing loss or injury to life
  2. A tragic aspect or element.
  3. A drama or literary work in which the main character is brought to ruin or suffers extreme sorrow, especially as a consequence of a tragic flaw, moral weakness, or inability to cope with unfavorable circumstances.

The Advisory Board to the Health 2.0 Conference have been rehashing the recent conference in preparation for the fall program. We are continuing to try to push the boundaries of how to highlight bleeding edge innovations (dessert) and the new tools and technologies (eye-candy), but trying to be disciplined in challenging the community to put up their hard core case studies (nutritious tofu in the words of Esther Dyson) that demonstrate why this movement actually matters. This latter one requires thoughtful discipline, and hard data, from people trying to do very hard things (like obtain accurate personal health data from disparate sources, help consumers understand and optimize health value, and show how these new models of care actually lower cost). We look forward to producing a great program and I will keep you posted on these conversations.

The reason it is so hard to “do the right thing” in health care is that the current environment is a conspiracy of connundrums – no accountabilty, no transparency, rules/regulations, culture, binding contracts, third party payments, behavioral choices, lack of evidence, etc ad nauseaum. A real world example of how this plays out can be seen in the Vicious Cycle of Healthcare Innovation. This article highlights what happens when health care providers “do the right thing” but are rewarded with less money, which then kills off not only their desire but also their capability to do the right thing. Its a beautiful mechanism to ensure that the status quo never changes. This “Death to Innovators” concept has been highlighted by Intermountain Healthcare (pneumonia), Virginia Mason (back pain), and health innovators like Rushika Fernandopulle , MD at Reinnassance Health.

These tragedies have to be overcome. Given the grip of the medico-industrial complex, and their lobbying minions in DC, the only hope I have is that an entirely new system of health can begin to develop and emerge “off the grid” for the current non-consumers of healthcare. From this toehold, and from early and small efforts of the myriad groups seeking to change the financing of healthcare, I am hopeful that innovation can emerge that will align incentives, coordinate care delivery, improve outcomes, and be rewarded appropriately for these results.  That is why I am involved in the various efforts to not only bring innovation to light but also demonstrate that these models can flourish.

Cool Technology of the Week

In my recent blog about the Red Flags rule, GreenLeaves commented that biometric checking would help reduce errors by establishing identity and uncovering fraud.

Using biometrics to verify identity seems like a good idea, so I met with Jim Sullivan from BIO-key, a leading provider of biometric solutions.

In
the past, I've been reluctant to adopt biometrics because of the
expense of buying fingerprint or Iris scanners for each of my 8000
client devices.

However, now that many laptops and hospital
ready tablets include embedded fingerprint swipe scanners and that the
price of USB fingerprint scanners has dropped significantly, it is
realistic to consider biometrics.

BIO-key has developed a
next-generation algorithm that reduces the fingerprint to set of
calculated unique identifiers. A person’s fingerprint graphic is not
the credential; their finger is. BIO-key ensures that only a real
finger is being scanned to produce these unique identifiers, making a
stolen fingerprint graphic useless to a potential imposter. It's the
computed values that are stored when the user's finger is scanned at
enrollment, and is later used for comparison with future scans. To me,
it's similar to the way NTLM authentication works – there is no need to
store or exchange the actual password, it's a mathematical hash of the
password that is compared to a stored mathematical hash of the original
password. BIO-key allows you to enroll and identify on most of the
different fingerprint scanners in the market, allowing an open,
heterogeneous fingerprint hardware environment.

Continue reading…

Cal Blue Shield wins recision case, but it’s very, very strange

So Blue Shield of California wins the first case  it’s fighting over the recission issue. But it’s in very strange circumstances. The plaintiffs (a couple trying to get coverage for a doctor they like that wasn't in their employer’s plan) changed their story and said that they had lied on their application. 

Blue Shield’s lawyer even went after St. Lisa herself!

Blue Shield's lawyer, Jacobs, also complained about "unrelenting negative coverage in the Los Angeles Times." Despite that, he said, "we fought this lawsuit because we knew we had behaved properly and we were confident that the evidence would speak for itself. It has."

So four burning questions remain.

1. Why did the couple who’ve been fighting this all the way, suddenly capitulate when not significantly different circumstances in the only other case to go to arbitration (the Healthnet case) led to a $9m verdict? Something happened here and in the interests of transparency Blue Shield had better tell, or suspicions will be raised.

2. If it’s so sure that it’s legally in the right, why did Blue Shield settle with the state insurance commissioner earlier this year (albeit on pretty favorable terms) and pay the out of pocket expenses and offer insurance to the 678 people with claims against it? If you’re in the right (and legally I think they may be in many of those cases), why be expedient?

Continue reading…

Calendar: Tufts Summer Institute on Web Strategies for Health Communication

What do millions of people do online and why does this matter to
healthcare? That question, and many related ones about how to take
advantage of the Web for health communication, will be answered in a
new course offered by Tufts University School of Medicine on Web
Strategy for Health Communication
, http://webstrategiesforhealth.com.
This one-week intensive course will be offered July 19-24 to help heath
communication professionals develop, justify, and implement a coherent
Web strategy for their organization.
 
Students will learn from Tufts faculty and industry experts, including:
Students
will learn best practices through case studies from leading healthcare
organizations. For some organizations, including Consumer Reports
Health, they will conduct Web strategy "makeovers". "Our challenge is
how to leverage our trusted brand to engage consumers online, explain
the scientific evidence behind their healthcare options, and ultimately
empower them to change their behavior so that they can live healthier
lives," said Tara Montgomery, who will be presented with the results
from student teams.

Another case study is Families for Depression Awareness.
“We started a Facebook page hoping it would bring more people to our
Web site but we don’t think it’s working,” Ritu Gill, Staff Member.
They also use twitter
but have one person they are following (moi), two tweets, and three
followers. Given limited staff and budget, how can they best use their
resources to help patients?

Other case studies are from the Road
Back Foundation, Memorial Sloan-Kettering Cancer Center, CureTogether,
Weight Watchers, and TuDiabetes.com. While the organizations differ in
many respects, they share the goal of how to best leverage Web
technologies today and in the future.

For more information go to: http://webstrategiesforhealth.com

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