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Jonathan Tobin: Defending the Right to a Jewish State

Heather Hale: Compliment your kids without giving them big heads

Megan Shauri: 10 ways you are ruining your own happiness

Carolyn Bigda: 8 Best Dividend Stocks for 2015

Kiplinger's Personal Finance editors: 7 Things You Didn't Know About Paying Off Student Loans

Samantha Olson: The Crucial Mistake 55% Of Parents Are Making At Their Baby's Bedtime

Densie Well, Ph.D., R.D. Open your eyes to yellow vegetables

The Kosher Gourmet by Megan Gordon With its colorful cache of purples and oranges and reds, COLLARD GREEN SLAW is a marvelous mood booster --- not to mention just downright delish
April 18, 2014

Rabbi Yonason Goldson: Clarifying one of the greatest philosophical conundrums in theology

Caroline B. Glick: The disappearance of US will

Megan Wallgren: 10 things I've learned from my teenagers

Lizette Borreli: Green Tea Boosts Brain Power, May Help Treat Dementia

John Ericson: Trying hard to be 'positive' but never succeeding? Blame Your Brain

The Kosher Gourmet by Julie Rothman Almondy, flourless torta del re (Italian king's cake), has royal roots, is simple to make, . . . but devour it because it's simply delicious

April 14, 2014

Rabbi Dr Naftali Brawer: Passover frees us from the tyranny of time

Greg Crosby: Passing Over Religion

Eric Schulzke: First degree: How America really recovered from a murder epidemic

Georgia Lee: When love is not enough: Teaching your kids about the realities of adult relationships

Cameron Huddleston: Freebies for Your Lawn and Garden

Gordon Pape: How you can tell if your financial adviser is setting you up for potential ruin

Dana Dovey: Up to 500,000 people die each year from hepatitis C-related liver disease. New Treatment Has Over 90% Success Rate

Justin Caba: Eating Watermelon Can Help Control High Blood Pressure

The Kosher Gourmet by Joshua E. London and Lou Marmon Don't dare pass over these Pesach picks for Manischewitz!

April 11, 2014

Rabbi Hillel Goldberg: Silence is much more than golden

Caroline B. Glick: Forgetting freedom at Passover

Susan Swann: How to value a child for who he is, not just what he does

Cameron Huddleston: 7 Financial Tasks You Should Tackle Right Now

Sandra Block and Lisa Gerstner: How to Profit From Your Passion

Susan Scutti: A Simple Blood Test Might Soon Diagnose Cancer

Chris Weller: Have A Slow Metabolism? Let Science Speed It Up For You

The Kosher Gourmet by Diane Rossen Worthington Whitefish Terrine: A French take on gefilte fish

April 9, 2014

Jonathan Tobin: Why Did Kerry Lie About Israeli Blame?

Samuel G. Freedman: A resolution 70 years later for a father's unsettling legacy of ashes from Dachau

Jessica Ivins: A resolution 70 years later for a father's unsettling legacy of ashes from Dachau

Kim Giles: Asking for help is not weakness

Kathy Kristof and Barbara Hoch Marcus: 7 Great Growth Israeli Stocks

Matthew Mientka: How Beans, Peas, And Chickpeas Cleanse Bad Cholesterol and Lowers Risk of Heart Disease

Sabrina Bachai: 5 At-Home Treatments For Headaches

The Kosher Gourmet by Daniel Neman Have yourself a matzo ball: The secrets bubby never told you and recipes she could have never imagined

April 8, 2014

Lori Nawyn: At Your Wit's End and Back: Finding Peace

Susan B. Garland and Rachel L. Sheedy: Strategies Married Couples Can Use to Boost Benefits

David Muhlbaum: Smart Tax Deductions Non-Itemizers Can Claim

Jill Weisenberger, M.S., R.D.N., C.D.E : Before You Lose Your Mental Edge

Dana Dovey: Coffee Drinkers Rejoice! Your Cup Of Joe Can Prevent Death From Liver Disease

Chris Weller: Electric 'Thinking Cap' Puts Your Brain Power Into High Gear

The Kosher Gourmet by Marlene Parrish A gift of hazelnuts keeps giving --- for a variety of nutty recipes: Entree, side, soup, dessert

April 4, 2014

Rabbi David Gutterman: The Word for Nothing Means Everything

Charles Krauthammer: Kerry's folly, Chapter 3

Amy Peterson: A life of love: How to build lasting relationships with your children

John Ericson: Older Women: Save Your Heart, Prevent Stroke Don't Drink Diet

John Ericson: Why 50 million Americans will still have spring allergies after taking meds

Cameron Huddleston: Best and Worst Buys of April 2014

Stacy Rapacon: Great Mutual Funds for Young Investors

Sarah Boesveld: Teacher keeps promise to mail thousands of former students letters written by their past selves

The Kosher Gourmet by Sharon Thompson Anyone can make a salad, you say. But can they make a great salad? (SECRETS, TESTED TECHNIQUES + 4 RECIPES, INCLUDING DRESSINGS)

April 2, 2014

Paul Greenberg: Death and joy in the spring

Dan Barry: Should South Carolina Jews be forced to maintain this chimney built by Germans serving the Nazis?

Mayra Bitsko: Save me! An alien took over my child's personality

Frank Clayton: Get happy: 20 scientifically proven happiness activities

Susan Scutti: It's Genetic! Obesity and the 'Carb Breakdown' Gene

Lecia Bushak: Why Hand Sanitizer May Actually Harm Your Health

Stacy Rapacon: Great Funds You Can Own for $500 or Less

Cameron Huddleston: 7 Ways to Save on Home Decor

The Kosher Gourmet by Steve Petusevsky Exploring ingredients as edible-stuffed containers (TWO RECIPES + TIPS & TECHINQUES)

Jewish World Review Feb 10, 2012 / 17 Shevat, 5772

Man with defibrillator demands access to his own heart's information

By Lisa M. Krieger





JewishWorldReview.com |

SAN JOSE, Calf.— (MCT) Hugo Campos has a small computer buried in his chest to help keep him alive. But he has no idea what it says about his faulty heart.

All the raw data it collects, especially any erratic rhythms it controls with shocks, goes directly to the manufacturer. And some of it later gets sent to his doctor.

But Campos had to step onto a national stage in his fight to see the data his body produces.

His David-and-Goliath campaign puts him on the leading edge of what's called the "e-patient movement" — "engaged, equipped and enabled" — that seeks to harness data so patients can learn more about their bodies.

"It's mine. I paid for it. It's in my body," asserts the tech-savvy 45-year-old, who since his sudden collapse at the Fruitvale, Calif., BART station four years ago has devoted himself to studying cardiology textbooks, attending device symposiums and scheming how to access the electronics of his tiny defibrillator.

"I have a right to my own damn data," he said.


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The information could help him take control of his health, said the Brazilian-born graphic artist.

Already he discovered — using an online spreadsheet accessible from his iPhone — that caffeine and Scotch trigger irregular heartbeats.

But it would be far better to have raw, real-time data, he said.

Federal law entitles patients to easy access to their health records, including X-rays and pathology reports.

But implanted defibrillator data is different. The information stays with manufacturers, who use it to monitor and improve their products. And it comes in a format that is not easily understood. Patients can get only interpreted data, not the raw data.

"It's just wrong," Campos asserts. "We get all our financial data — why is it different with health care? Patients should be empowered to take care of their lives."

DELUGE OF INTEREST
Each year, hundreds of thousands of Americans are implanted with small battery-powered electrical impulse generators, such as pacemakers, loop recorders and cardiac defibrillators.

The devices are critical for people like Campos, whose irregular heartbeat threatens sudden cardiac arrest. They also wirelessly transmit data to bedside monitors, and then over a telephone line to the manufacturers.

Much of the collected data — such as average heart rate, fluid accumulation, atrial arrhythmias — is diagnostic.

But these devices also collect huge amounts of proprietary information, such as wiring breakdowns, battery voltage and the time it takes to release a shock.

Calls and emails deluged him after an online video of last November's TEDxCambridge speech went viral. He has also testified before the U.S. Food and Drug Administration and been featured on National Public Radio.

He's started a blog, founded an online "Implantable Cardioverter Defibrillators (ICD) User Group" and embraced a new world of patient advocacy through social media. He's even written a protest song inspired by Malvina Reynolds' "It Isn't Nice." ("It isn't nice to grab my data, from my implantable device. Then to hog it, keep it from me. That's not right, I've told you twice. It isn't nice.")

To prepare himself to understand the device and its data, he earned a certificate from the Arrhythmia Technologies Institute. "Patients need to educate themselves," he said. "It really is the only way to get a proper seat at the table."

In an effort to better understand their construction, he's bought 19 different used devices on eBay, storing them in velvet sacs in a gold-decorated box.

"He is a pioneer. He's an articulate visionary who sees what is possible and expresses it as common sense," said Dave deBronkart of Nashua, N.H.

DeBronkart is a kidney cancer survivor who launched a right-to-information campaign after discovering that his hospital had exported a Google personal health record riddled with inaccuracies and omissions.

Campos' campaign has a professional supporter.

"It is embarrassing to leave our patients in the dark, by design or technological necessity," wrote Dr. David Lee Scher in his blog. The former cardiac electrophysiologist founded DLS Healthcare Consulting, which advises digital health companies.

He cautions that the data is very technical, even for physicians, and often irrelevant. He urges patients and physicians to work together on a solution.

The concept of "open access" is gaining tradition in the medical device world. The Palo Alto, Calif., startup Glooko, for instance, sells diabetics a $40 cable that connects glucose meters to iPhones. Meter readings are automatically downloaded, so patients can constantly monitor their blood-sugar levels.

But so far, the billion-dollar ICD industry has been cool to Campos' campaign.

INTERPRETING DATA
The device is implanted for the therapy it delivers, not the information it gathers, manufacturers told Campos. They worry that patients unable to interpret the raw data might become alarmed.

One manufacturer is aware of the building controversy.

"Medtronic is looking into ways to provide patients with meaningful and actionable information with regard to their implantable devices," said spokeswoman Kathleen Janasz. "We will take all of this feedback into consideration as we move forward in assessing the most appropriate solution."

In resistance, Campos has decided on a risky political act, rejecting his remote monitor.

"I will not be monitored remotely unless I'm part of the loop," he asserts.

But new allies have rallied to him: hackers.

More than a dozen engineers have volunteered to help him tap into the wireless system and unlock the data.

"I'll get it," he said, "one way or another."

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© 2012, San Jose Mercury News. Distributed by MCT Information Services