Reform your own health care: Join the ePatient Revolution.

The current interactive nature of the internet has radically changed the way in which we obtain, digest and share information. The presence of multiple, high quality, collaborative social tools has in turn lead to the concept of the “ePatient”. Such patient's are equipped, enabled, empowered, engaged, equals, emancipated and experts. The tools available on the internet and other social media sites like Facebook and Twitter allow these patient's to interact with each other and potentially to obtain better care from their physicians.

When I was an intern at Harlem hospital, the internet was in it's infancy and (I think I can safely say) few if any of the patients that I saw would have been considered ePatients. Later in my career I shared the concerns of many physicians regarding the dangers of information which patients had obtained from the internet regarding medical conditions.

Our concerns were that such patients might have easily been mislead by inaccurate, dangerous or poorly interpreted information from unreliable sources. And, while I still have concerns regarding some information on the internet; it is clear that much of the information is very well balanced and that patients who take full advantage of these resources are likely to have considerably better outcomes than those who do not take advantage of such information.

A recent conversation with a new friend on Twitter provided me with an epiphany. She said that a doctor may have to think about a rare condition for a few minutes in a year; but a patient with that same medical condition thinks about it every day. I presume this is also true for patients with chronic conditions or short term medical concerns or pregnancy complications.

More and more often I see patients who have sought out detailed information online before they speak to me in a clinical setting. This type of engagement from newly empowered patients in many cases sets the stage for a much more in depth and comprehensive conversation and is greatly appreciated.

As we debate reforms in the health care system in the United States, it is clear that regardless of what happens in the near future, there are tangible things each of us can do to improve the quality of our own health care.

Recently, Dr. Val Jones of Get Better Health spoke on ABC about what is being called the ePatient revolution. A link to the video as well as links to popular sites for patient empowerment can be found below:

RESOURCES:

Med Help

Pill Box (beta)

Google Health

Patients Like me

ePatients.net

Society for Participatory Medicine.


It will be interesting to see if other medical professionals will embrace the type of participatory model being espoused by ePatients. It will also be important to make sure that communities which have traditionally lagged behind in measures of health will encounter a digital divide due to lack of access to the types of technology that makes the aforementioned types of collaboration possible.

 

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The High Price of Poverty in Health

Real health care reform will require addressing systemic socio-economic problems and activating low income patients to take responsibility for their own care.

Spotlight Webcast - Dr. Risa Lavizzo-Mourey from Spotlight on Vimeo.

A recent webcast provided by Spotlight on Poverty and Opportunity features Dr. Risa Lavizzo-Mourey, president & CEO of the Robert Wood Johnson Foundation discussing social and economic factors that influence health including access to high quality health care, healthy neighborhoods and grocery stores. In the interview, Dr. Lavizzo-Mourey explores how investments in disease prevention can mitigate health disparities and examines how health reform legislation will affect low-income Americans. The webcast is hosted by Spotlight’s Mary Jo Walsh.

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The Blog that Ate Manhattan: TBTAM on Healthcare Reform

This is one of the best blog posts I have read on healthcare in a year. It is required reading as far as I'm concerned. Will blog about it in greater detail later.
http://theblogthatatemanhattan.blogspot.com/2009/10/tbtam-on-healthcare-reform.html

Sent from Onyeije's BlackBerry Storm

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A clear explanation of Google Wave.

Perhaps one of the best explanations of Google Wave yet.  And a plaintive appeal from those of us who await a coveted invite...

 

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Putting Patients In Charge Of Their Own Lab Tests - Health Data Rights

Readers of this blog and my other online commentary know that I am passionate about developing ways for technology to allow patient's to control their access and utilization of health care services.  In the past I have written about the need for Health Data Rights. 

Recently, I learned about an upcoming meeting to be held on Tuesday, October 20th, 2009 by the Health IT Policy Committee at the Office of the National Coordinator for Health Information Technology.  This meeting will deal with CLIA  (Clinical Laboratory Improvement Amendments) laws and access by patients to their own test results. It may be surprising to know that patients face federal barriers access their own lab test results. 

 

At this meeting, Dr. Phil Marshall of WebMD will testify and present a letter that provides background on this issue and recommends ways in which current legislation can be changed to allow greater access while maintaining patient confidentiality  The letter has been reviewed and vetted by some of the top health data experts and health privacy lawyers and can be found here:http://www.healthdatarights.org/pdfs/CLIA-Letter.pdf


WHAT DOES THE LETTER SAY?

 

THE ISSUE AT HAND: Current 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. 

 

THE PROPOSED CHANGE: The letter proposes that the special treatment of test result data be eliminated, and that this information be treated under HIPAA just like other protected health information. It also proposes that Authorized Persons explicitly include the patient (upon request by the patient)

THE POTENTIAL BENEFITS:

  1. 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.
  2. The changes proposed are 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.
  3. Currently 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 .
  4. 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.
  5. The changes could facilitate the use of health management applications and services that could make use of test results and have the potential to help consumers better manage their health, make more informed health decisions, and help lower costs.

HOW CAN YOU HELP?

Read the letter and inform those in your social network about this important meeting.

 

Comment below and suggest additional actions that you feel might be appropriate for HealthDataRights.org to undertake.

 

As noted above, 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

.....

Chukwuma I. Onyeije, M.D., North Georgia Consulting Services and Atlanta Perinatal Associates.


…....and YOU

 [email action@healthdatarights.org ] to join.

 

PS: Please retweet and forward this link to your friends and don’t forget to endorse healthdatarights at http://www.healthdatarights.org/

 

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The ugly, the bad, the very good and the great at the Health 2.0 Conference

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October 10, 2009

The ugly, the bad, the very good and the great at the Health 2.0 Conference

By Matthew Holt

So the Fall Health 2.0 2009 conference in San Francisco at the Concourse Exhibition Center is over. The bunting is down, the cocktails are drunk, and everyone can get back to the sanctity of the WiFi enabled office or home. (Yes, we're sorry about that problem and need to stress that it was NOTHING to do with AT&T who graciously sponsored the conference but were NOT providing Internet access). 

But it doesn't detract from the fabulous experience of seeing perhaps the most amazing line-up of health technology ever in one hall together--not to mention some of the biggest names in the Health IT world going toe to toe. Health 2.0 had over a hundred speakers and nearly 80 live demos and technologies on display on stage--not to mention 30 more in the exhibit hall. We featured Health 2.0 Tools for doctors, ePatients telling us what they needed, and a stirring address from CTO of the US, Aneesh Chopra. Then there was some remarkable integration over unplatforms in the tools panel--(I don't know how often Esther Dyson gives standing ovations but that was great to see). And there was so much more.

Congrats to Remedy Rx Ventures and Unity Medical--joint winners of Launch! But honestly we believe that everyone who presented had something important to show and say. Thanks to everyone who came, demoed, sponsored, spoke, volunteered and worked so so hard (especially the volunteers who stayed late on Wednesday to move tables and chairs).

We had a great time and we made a difference. There'll be videos and more up here next week. For now, take the weekend off!

My more detailed comments are below the fold.

The Ugly: The WiFi came from the sole source vendor attached to the venue. There is no permanent WiFi or Internet in that building. In Fall 2008 we had a maximum of 200 simultaneous users and our attendee numbers were similar this year. We contracted for an average of 300 simultaneous users with the ability to handle peaks of several hundred more and paid a large extra fee for “over-engineering” in case of last minute requests. The Internet was set up on Monday afternoon and the WiFi only worked spottily. At that stage there were only about 15–20 computers in the building. The vendor told us that because the network was open multiple people outside were on it. We were also told that interference from other equipment was the problem and the only option to was to get a completely different vendor in to build a new network, but that might still not work. We then made their suggested changes which you saw on Tuesday morning (more channels, passcodes, etc) and it failed again. Upon further conversation with the vendor it was determined that no amount of extra work or money could guarantee us securing adequate WiFi by end of day Tuesday, so we then made the strategic decision to protect the podium links, the sponsored Twitter lounge, the press area and the exhibitors as much as possible and laid down a whole new set up for them over the next 24 hours at a very substantial extra cost. We did that because we figured that people wanted to see the demos on stage more than they wanted to read their email or surf the web, especially given that most people have got a data plan that keeps them in touch on their cell phone.

I promise you that all of us at Health 2.0 are just as aggrieved as you are and much poorer due to these problems. In addition, the Internet failed in one break out room at the end of Day 2 (which lead to an great impromptu rant from Jane Lincoln at AARP). We don't have any information about why this happened and we are still investigating. It was fine for the start of that session and I can only apologize. The Internet was also perfect for the test with the facility where Glen Tullman spoke from earlier in the day, but in the end that connection was problematic although I could understand everything he was saying and I don't think it interrupted the flow of the panel too much. Glen was due to appear in person, but 10 days ago his son had a football game that was rescheduled and he has a family commitment to never miss them. I'd rather have had him physically there--not the least of which was because that connection cost us several thousand dollars--but given his status and role in HIT I think it was better to get him via video than have a late and lesser substitute.

We of course apologize to everyone who came expecting flawless WiFi.

The bad: We knew the venue was unusual and would have challenges. We also know that TechCrunch50 has now used it twice successfully. What you may not know is that due to our growth there are only 3 venues in San Francisco that can accommodate us, and the other two were completely full in the midweek from mid September to Thanksgiving. We seriously considered having the conference start on a Sunday, but decided that some of the issues with the Concourse could be turned into features not bugs. That included easy access to and from the Exhibit hall, everyone being close to a screen—we’d had previously some complaints from other venues about demos being hard to see--and the ability to bring in much better than hotel quality food which was organic and locally grown. In addition, as we were booking a block of hotel rooms independent of the conference venue we were able to negotiate a sub-$200 rate with free Internet at the Westin, which wouldn’t be possible at a typical conference hotel. We know that there were issues with noise bleed between areas, although IMHO whenever I was in the break-outs it was fine. We also know that some people felt the location was just too far away from downtown. Obviously we’ll consider all the feedback we’re getting very carefully whether we return there next year.

More bad: We also know that sound was a problem especially after lunch on Day 1. Apparently this was due to the large temperature variation (from about 55 to 85 degrees) outside and inside the room throwing off the microphones. (No climate control in the SF Concourse). We’re investigating this further but in general we feel that our AV crew from AVT did a fabulous job given that we have a very complex production, and relatively little time in the venue.

The very good: I know everyone has very high expectations but there is no conference in health care anywhere that shows as much cutting edge live online technology as Health 2.0 (and precious few outside health care). With the exception of the Health Aging break out mentioned earlier, (as far as I’m aware) every single live demo worked flawlessly. Only two on the main stage had any issues at all, one (MDLiveCare) because the doctor on the other end was late, and we were able to show that that portion of their service worked when he finally got there, and the other (Optum) had a failed call out from within its test environment to another web service (maps), but its main service worked and Karl Ulfers had a back up powerpoint to show what it looked like.

And what a great collection of demos they were. I want to stress my thanks to all the demo-ers and Lizzie Dunklee and Lauren Verilli who worked tirelessly through multiple rehearsals to get them right, and then worked with the demo-ers and the team through last minute technical adjustments on site. Consider that for Launch! 11 people who had never demoed their brand new products before, let alone to such a big crowd, all stuck to their time limits and in my view gave a fabulous introduction to their services. Frankly we love our demo & discussion format, and the reviews show that most attendees do too.

The great: The Health 2.0 conference tries to put the latest developments in Health 2.0 in the context of their importance in the wider health care debate. Our program moved between clinical group-ware connecting patients and providers, payers offering new services (or sneering disdainfully at others), patients discussing real life use of Health 2.0, both big players and tiny start-ups showing a huge range of tools for consumers, and communities now producing data and services to power clinical decisions and discovery. We added to this mix vociferous debate on whether Health 2.0 could bend the cost curve, and who should define meaningful use as HIT meets Health 2.0. And of course we heard from and got access to the new Administration as it wrestles with issues like how to stimulate innovation in health care. I think very important things were said and shown throughout the whole program.

I honestly believe every person and company on stage played their part, and of course everyone went through a rigorous selection and rehearsal process (if you sneeringly think it was pay to play see my comment on this article).

So please don’t be offended if I pick a few of my favorites and leave you out!

  • Clinical Groupware We reviewed all 16 of the Fall 2008 break-out panels, and hands down the best was the “connecting patients & providers” panel; so we moved it to the main stage. At the same time David Kibbe and colleagues were developing the clinical groupware collaborative. There’s lots more to clinical groupware, but we focused on the physician-patient interaction. In fact all five demos were illustrating a particular point within that encounter. These were patient form completion and integration with the physician view (VisionTree), information brought into an online clinical encounter from external record (American Well), physician-issued careplans shared with a patient (RMD), live chat combined with live physician charting (Myca/Hello Health) and data integrated from IHE platform and shared with patient (RelayHealth). I thought the whole panel including Ron Dixon and his crew of skeptical docs was superb, although if I had to pick out one favorite it would be Hello Health’s Paul Abramson playing both the doctor AND the patient in a live chat while charting the whole visit in 3 and 1/2 minutes!
  • The Accelerator on the Tools panel. When the annals are written about patients using tools to manage their health online and the term Health 2.0 is forgotten there’ll be a special footnote about Julie Murchinson, Aaron Apodaca, Erick von Schweber and the rest of the crew who put together the Accelerator demo. This group has shown a bright light down the path we need to go, and its up to all of us to follow. Plus it was a rocking tour de force romp through eight applications, each doing something really interesting.
  • Demos I loved (just a few of many).
    • MyPacs.net. Rex Jakovobits has built an interface that’s so intuitive and a business concept that’s so obvious it makes me almost want to start learning radiology so I can use it!
    • MyHealthExperience. They’re teeny, their unfunded and seemingly all they’ve got going for them is a great advisor group (yes, I’m one!) but MyHealthExperience (from HealthWorldWeb) showed that they’ve got the tools and the technology to fix one of the biggest problems in American health care—finding an appropriate in-plan physician based on issues the consumer cares about.
    • Relate Now. It didn't show up much in the voting for Launch! but Kelly and her team have built a total solution for an awful problem—how to help parents manage the process and content for the care of their autistic kids in an environment where there are just not enough money or people with skills for it to be done any other way. This is absolutely the type of urgent problem that Health 2.0 tools ought to be fixing.
    • Healthline Navigator. Also on Launch! it doesn't come with bells and whistles but Healthline’s new service solves three problems at once. It helps users understand words and concepts in context, it has a way of allowing FDA demanded drug information to be usefully delivered in context and most importantly it allows consumers to go to the best content immediately—even if it’s not on Healthline’s site
    • Microsoft’s MyHealthInfo. They’ve built a beautiful front-end to HealthVault (at last!) and the power of this unplatform is only going to grow.
    • ScanAvert & emota.net. A couple from the breakouts. ScanAvert literally looks at the barcode on the food item and tells you whether or not you might be allergic to it, and warns you about drug food interactions. Personalized immediate decision support. emota.net is just out of the lab but it’s a whole new interface for seniors to connect with their family and network.
  •  Data Drives Decisions and Debate A few key moments in some contentious discussions.  Jamie Heywood argued essentially that PatientsLikeMe data is better (or at least as good and more accessible) than typical clinical trial data. Kristin Peck of Pfizer said that they couldn’t use it because of regulations, Jamie told her that other pharmas were. one to be continued. Chris Ohman said of KP said that he’d love to use Quicken for his members but that it wasn't allowed. I’m sure he’s wrong, but it indicates the pressure health plans feel about regulation in this new space. Maggie Mahar and Al Waxman went at each other on whether we can do anything for poor Americans using technology, and whether those with unhealthy habits should pay more. I believe there’s a middle ground there, but Maggie caused the trouble I asked her to when she said that 95% of smokers have mental illness. Really? Smoking is a disease? I guess we say alcoholism is too. And of course Jonathan Bush thinks that software sans a service enabled operation behind it is useless, while Glen Tullman said that the stimulus was working and EMR adoption as picking up. he also said that Allscripts is now more than 25% SaaS-based. Glen also took a shot at Epic—market leaders in big hospitals—for hindering interoperability.
  • Chopra gives us a kick-start. Aneesh Chopra gave the conference a great kick start when he asked us to use government’s data and to pay attention for the creating an environment for innovation. We’ll be connecting with Aneesh and Todd Park very shortly—stay tuned.

Demands and opportunities. Finally a word about what really matters here. I’m more than a little fed up about various cynics whining on about “Health 2.0 companies with no business models”. The facts are that several Health 2.0 companies born just a few years ago are doing fine and are unofficially profitable including several in the advertising-supported space. And that’s in an economy where everyone else has been in free-fall. Everyone else is in a typical technology life-cycle where the natural process of new technologies fitting into the market continues to evolve. Of course some will fall by the wayside. But there are several examples where what were ideas and technologies alone introduced just one or two years ago now have clients and traction because they’re solving a problem.

But behind the sneers is some really dumb thinking, often from self-proclaimed Health IT experts. We don’t need more technologies that only work as business models in the current incentive environment. And meanwhile if you’ve been paying attention not so many of the traditional health care players are exactly doing well right now either.

To riff off Susannah Fox. “Healthcare UR DOIN IT WRONG.” 

We have plenty of technologies and services adding to our problems and making our health care system more opaque. If ACOR, PatientsLikeMe or CureTogether, to pick just three, don’t work as businesses in the current health care system, yet are producing tremendous benefits for consumers and patients, IT’S THE SYSTEM THAT NEEDS TO CHANGE. And it will, pushed along by these changes in the “forces of production.”

Luckily there are enough people in DC and in the health care industry, as well as out there in America who realize that. At Health 2.0 we’re going to continue to showcase those innovations that make a real difference. We look forward to showcasing the community as it grapples with these problems.

Oh, and if you didn't understand Jonathan Bush's entry in his red shorts throwing a missile at Glen Tullman’s face on the video-screen, you really need to watch this.

October 10, 2009 in Health 2.0, Matthew Holt | Permalink

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Vaccination Made Simple.

Originally published at VitalSigns on October 8, 2009 7:40 PM.

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AMNews: Resident duty hours: Does more sleep mean safer care? ... American Medical News

I would say that the initial data regarding duty hours were impressive. But where are the prospective studies?

http://www.ama-assn.org/amednews/2009/10/05/prsa1005.htm

Interesting article. Sent from Onyeije's BlackBerry Storm

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Issue Clash on PBS NOW: Maggie Debates Phil Kerpen

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September 25, 2009

Issue Clash on PBS NOW: Maggie Debates Phil Kerpen

Over the past few weeks, I’ve been involved in an Online Debate for NOW on PBS.  The subject: “Should Wealthy Americans Be Taxes to Pay For Health Care Reform?”

During the three rounds of debate, my opponent,  Phil Kerpen, Director of Policy at Americans for Prosperity, brought up some interesting issues about just how much the very wealthy pay in taxes.  It turns out that they pay so much because they earn so much more than everyone else. .

Did you know that, since 1975, the wealthiest 1 percent have enjoyed a  232 percent hike in their income? Over the same span, the bottom 90 percent watched their income creep up by just 10 percent.

NOW has just published the debate online here: http://www.pbs.org/now/shows/health-care-reform/ic-health-reform-wealthy.html

To read the second and third rounds of the debate, click on “Rebuttals” and “Follow-Ups, right under our pictures.  Viewers are voting on who won the debate; to see how I’m doing, click on Who Won the Debate? at the bottom of the page.

Posted by Maggie Mahar on September 25, 2009 Permalink --> |

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Ed--

I totally agree that reducing costs, and eliminating waste should be a number one priority.

But at the saem time covering Everyone is going to require some seed money.

A great number of uninsured and underinsured people haven't seen a doctor in a long time.

This will be expensive,and there is no quick fix.

The tax hike that the Obama adminsitration and the House bill propose would raise taxes only on the wealthiest 1 1/2 percent and take those tax rate to where they were in 1995 when Geroge Bush Sr's administration set tax rates..

By historical standards, these 1995 tax rates are still very, very low for the wealthiest Americans

Meanwhle, in the last 30 or so years, the wealthiest one percent of all Americans have begun to take a much larger share of the nation's total income.

Since 1975, income for the top 1% has risen by 232%.
During that same periodof o time, the lower 90% of all Americans saw their income creep up by only 10%.

Meanwhile, since 1975 tax rates for the wealthiest 1% have been slashed substantially. So they are taking a larger share of income--and paying less in taxes.

Posted by: Maggie Mahar | September 27, 2009 at 12:42 AM

Why have these taxes at all? Step one is to take the money out of medicine, then a whole lot of people can be treated at less than is paid now.

I agree with someone I saw on a business channel today --- problem one is reducing costs and that isn't being done.

Posted by: Ed | September 26, 2009 at 10:09 PM

Bix--

I have to say that I'm in favor of a soda tax--but against a tax on "juice packs" and fruit juices.

There is very little to no nutritional value in most sodas--colas, etc.

The exception: club-soda/seltzer. No there is no nutritional value per se--it's just water-- but for kids, it can quench their thirst, giving them the bubbles that they like in sodas, and, for all of us, provide the benefit of drinking many glasses of water a day.

As for the fruit juice and fruit juice packs which both low-income and higher-income people buy . . .

On the one hand they are are high-carb--ideally people would be eating the actual fruit instead.

But given that fresh fruit is not availabe at reasonable prices in most poor neighborhoods, fruit juice is a good substitue, particularly for kids.

I do support higher taxes on cigarettes--though I know that this is a regressive. The vast majority of adult smokers in this country are very poor.

But higher taxes make it harder for teen-agers to start smoking.

I also think we should use those tobacco taxes to set up Free Smoking Cessation Clinics giving out Free Nicotine patches (and whatever else works.

Posted by: Maggie Mahar | September 26, 2009 at 06:29 PM

There is talk of a soda tax that would "raise billions of dollars in revenue that could be used to fund healthcare."

The soda tax is a regressive tax. It disproportionately affects the poor and minorities.* If you are looking to a soda tax for money, you are looking towards a group who can least afford it.

* http://www.ajcn.org/cgi/content/full/87/5/1107

Posted by: Bix | September 26, 2009 at 05:25 PM

COMMUNISM FOREVER!!


EVERYONE ON WELFARE!!

YES, WE CAN!!!

Posted by: Karl Marx | September 25, 2009 at 07:17 PM

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Texting while driving... More Dangerous than DWI?

The Clinical Cases and Images Blog has an article which provides more information regarding the dangers of texting while driving (TWD).  Quoting the New York Times they indicate that:

From the NY Times:

Texting while driving Lifts Crash Risk by Large Margin, far surpasses the dangers of other driving distractions. When the drivers texted, their collision risk was 23 times greater than when not texting.

36 states do not ban texting while driving; 14 do, including Alaska, California, Louisiana and New Jersey.

95% of drivers said that texting was unacceptable behavior. Yet 21% had recently texted or e-mailed while driving.

50% of drivers 16 to 24 said they had texted while driving, compared with 22% of drivers 35 to 44.

 

Embedded video from CNN Video

 

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About

Information-Age Maternal-Fetal Medicine Specialist
Seeking to improve pregnancy outcomes for women with high-risk pregnancies and reform the health care system.