Sunday, December 30, 2012

New Limb-Lengthening Tech May Reduce Complications

New Limb-Lengthening Tech May Reduce Complications for Sufferers of Crippling Deformities
By Mollie Bloudoff-Indelicato
Scientific American

Screaming woke Lanz Ellingsworth. The piercing cries were loud, they were shrill — and they were coming from his daughter’s bedroom.

At 8:30 p.m., Ellingsworth and his wife had tucked their youngest, Lindsay, in for the night. They read her a bedtime story, kissed her on both cheeks and crept out of the room. Six hours later, their little girl was a mass of quivering agony.

In the middle of the night Lindsay had shifted slightly in her sleep. The abnormally brittle femur in her left leg splintered into multiple pieces. She woke from her dreams and plunged into a living nightmare.

“When I woke up that night, what I kept repeating was that ‘somebody hit me with a sledgehammer,’ Lindsay says. “That’s how it felt. Somebody literally smashed my leg with something. And I just screamed.”

Lindsay, a tiny, freckled eight-year-old, was used to pain. She was born with a congenital limb deformity called “underdeveloped femur condition,” in which one leg is shorter than the other by more than two centimeters. Up to 100,000 people are diagnosed with limb-length disorders in the U.S. each year, according to Bart Balkman, vice president of Ellipse Technologies, an Irvine, Calif.–based orthopedics company.

Left untreated, the condition can result in chronic pain, loss of mobility, degenerative arthritis and debilitating scoliosis, an abnormal and painful curvature of the spine that typically progresses throughout one’s lifetime. At birth or shortly thereafter parents whose children have a severe discrepancy (estimates range from a two- to three-centimeter or more differential) must make a decision—amputate the shorter limb or commit to a lengthening regimen to equalize them.

“Can you ever imagine having a child and loving that child and being told that part of your child’s leg had to be amputated?” says David Hootnick an orthopedic surgeon in Onondaga County, N.Y., who studies congenital abnormalities. “Can you imagine the emotional stress you’d have to go through?”

Limb-lengthening technology has progressed significantly from the early 1950s when a handful of doctors first began the practice. Gavriil Ilizarov invented the external fixator in Russia, a device he modeled after a horse harness. Now, about 100 surgeons in the U.S. perform limb-lengthening procedures, and a new internal approach offers patients expanded mobility and promises fewer complications. The device, called “Precice,” received U.S. Food and Drug Administration approval for consumer use but is still relatively unknown within the greater medical community.

By far the most common procedure for children with leg discrepancies—and the one used in Lindsay’s surgery—is an external “fixator.” Surgeons break a patient’s bone in half and pull it apart, allowing the body’s natural healing capabilities to fill in the gap with new bone, thereby lengthening the limb.

John Blanco, a specialist in pediatric orthopedics and scoliosis at the Hospital for Special Surgery in New York City, has been performing the operation for years. With the patient under a general anesthetic, Blanco drills screws into the top and the bottom of the afflicted bone. The screws are fastened into a metal frame that will stabilize the leg during and subsequent to the procedure. After cutting a small incision in the leg, Blanco takes a hammer and breaks the bone in two. It’s a dull sound, he says, like hitting wood—more of a thwack than a snap. The finished product resembles an Erector Set construction covering the leg.

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Location:Georgetown ,Tx

Saturday, December 29, 2012

Graft Helps Nerves Regrow

Graft Helps Nerves Regrow

By MELINDA BECK - Wall Street Journal

Edward Bonfiglio was on a routine patrol with a Marine unit in Afghanistan in 2009 when it was hit by small-arms fire and rocket-propelled grenades. A round smashed through the Navy medic's left leg, leaving him unable to move it or feel anything but pain.

A few weeks later, at a military hospital in Bethesda, Md., Mr. Bonfiglio was given a choice: try a new technique to regrow his severed sciatic nerve, or have his leg amputated below the knee.

"I was pretty adamant about keeping my leg," he said.

Three years and hundreds of hours of physical therapy later, the 26-year-old Mr. Bonfilgio has regained much of the use of his leg. He has graduated from a wheelchair to a cane and can even jog slowly. His leg isn't perfect and never will be, but, he said, "I never saw myself being able to walk with just a brace on my leg."

More than 300,000 Americans suffer severed peripheral nerves in their hands, arms, legs and feet every year, often due to highway accidents or mishaps with tools or knives. Combat injuries also are big contributor.

Traditional nerve repair involves using a piece of healthy nerve from the patient—usually from the back of the ankle. But that requires a second surgical incision and often leaves a numb spot where the nerve was removed.

Some gravely wounded soldiers don't have a lower-extremity nerve to spare. Surgeons also can use synthetic tubes, but they are most effective for repairs smaller than one centimeter (about 0.4 inch).

A new type of nerve graft made from processed cadaver nerves is giving surgeons another option for rebuilding nerves, sometimes in limbs that previously couldn't be saved.

"It has become the standard of care for our group," said Lt. Commander Patrick Basile, director of microsurgery at Walter Reed National Military Medical Center, who operated on Mr. Bonfiglio. Since that operation, the division of plastic and reconstructive surgery there has used the new nerve allografts, as this type of graft is called, in about 20 other patients.

Surgeons are using the allografts to repair nerves damaged in other situations as well, including oral surgery and cancer operations. Houston urologist Kevin Slawin uses them to reconnect erectile nerves when they can't be spared during prostate-cancer surgery.

Not all severed nerves can be repaired. Injuries to the central nervous system, in the brain and spinal cord, are almost always permanent.

But parts of the peripheral nervous system, which facilitates movement and feeling in the rest of the body, can regenerate. The section beyond the break dies, leaving just the original sheath. The other side can regrow into the sheath at a rate of about one millimeter a day. But if there is a gap, the nerve needs a bridge to grow back correctly, or it can create a dysfunctional bundle that causes pain.

Allografts use cadaver nerves that are treated to remove cells and other tissue, leaving hollow nerve channels for the patient's own nerve to grow into. The segments come in a variety of widths and lengths—up to seven centimeters currently.

"We can take the exact size we need out of the freezer," said Greg Buncke, director of the Buncke Clinic in San Francisco, who said the clinic uses allografts almost exclusively now in trauma cases.

Registered for use with the Food and Drug Administration in 2007, the allografts are made by AxoGen Inc., AXGN -4.73% of Alachua, Fla., and have been used to date in about 7,000 patients, according to Erick DeVinney, AxoGen's director of clinical and transplantation sciences. Most have involved nerves that control feeling, but allografts increasingly are being used to repair nerves that control movement as well.

Some veteran clinicians aren't yet convinced that allografts are as reliable as a transfer of a patient's own nerve (known as an autograft).

Surgeons say no randomized trials comparing the two types of grafts directly have been published, but several studies have shown that results with allografts are as good as those reported historically with autografts, and better than with tube conduits, with no complications or rejections.

Using an allograft costs about the same as a tube conduit, and less than an autograft since less surgical time is needed.

"Autograft is the gold standard, so some surgeons don't like to deviate from that," said Steven Moran, an orthopedic and plastic surgeon at the Mayo Clinic in Rochester, Minn. But Dr. Moran said he much prefers allografts to harvesting a patient's nerve. "That's another big incision, another area to heal and some patients get a painful nerve scar on that site," he said.

Repairing Mr. Bonfiglio's sciatic nerve required a five-centimeter graft—the biggest ever used at the time. The nerve had to grow back, millimeter by millimeter, from his thigh to his toes and he had to constantly exercise his leg muscles so they didn't atrophy.

"I wasn't the greatest patient—I was a pain in butt. But I got it done," said the former medic, who now is studying to be a physical therapist himself.

Write to Melinda Beck at

A version of this article appeared December 27, 2012, on page A3 in the U.S. edition of The Wall Street Journal, with the headline: Graft Helps Nerves Regrow.

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Location:Georgetown, Tx

Friday, December 28, 2012

Here it comes, the change nobody expects

From the Georgetown Advocate
The Tech Savvy Patient - Webster Russell

Catherine the Great once said "A great wind is blowing. It will either give you imagination or a headache.” Even though she lived in the late 18th century, there are times when I think she was referring to today's life and times specifically the technological growth we have seen in the last fifty years. I know technological advances are wonderful things and for the most part they make our lives better. The problem is that these advancements come in fits and starts. Just about the time you finally get use to the new fangled thing, it is changed and you are back to square one.

I started traveling this circular path when I bought a programmable Texas Instrument calculator in the late '60s for use in the interpretation of a type of blood test. From that point until today I have been fascinated with healthcare/medicine's technological revolution and how it affects the delivery of this important part of our everyday life.

About ten years ago I had an ah ha moment when I discovered that something else was going on. These changes harbored a stealth like evolution in the patient/physician relationship. I don't want to get to deep into the weeds, but let me explain what I mean. The patient, that's you and me, has become far more sophisticated in our choice and use of the healthcare system. We are transforming from the quiet, non participative patient to an activist customer/consumer. As innocent as this appears on paper, it is an extraordinarily powerful shift. This shift in control may be best summarized by Kenneth Hammond when he wrote. “A generation ago, individuals gratefully accepted whatever information they were given….The doctor…was the source of all knowledge and data. Today we expect the network of information will be there and made available to us. Now in almost every action we have with a professional, we take it for granted that we are also a partner and decision maker.”

The information we need to achieve this new status is out there for the harvesting, and the means of gathering it, storing it and recalling it is literally at our fingertips. Over the next weeks and months I will try to help you discover these tools, as well as the information you might need to help you become more of a partner in the management of your healthcare.

Now to peak your curiosity, something happened on January 10, 2007 that started this revolution, what was it?

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Location:Georgetown Tx

Ten Ways Patients Get Treated Better

Ten Ways Patients Get Treated Better
Laura Landro - The Wall Street Journal

Even healthy people worry about the quality of care they can expect to receive when they become ill. Will a cancerous tumor be spotted early enough? Will hospital staff move fast enough to save my life? What is the worried-looking doctor scribbling in my chart?

Health-care innovations aren't limited to drugs and devices. Experts increasingly are adopting new ways to treat patients that studies show are better at healing the sick, preventing disease, improving patients' quality of life and lowering costs. Here are 10 innovations that took root in 2012 and are changing the care patients will get in 2013.

Doctors Are Adopting a Better Bedside Manner

Hospitals increasingly have a new focus: keeping patients happy. Surveys sent home after a hospital stay are asking patients to rate everything from whether nurses and doctors seemed attentive to their concerns to how clean their room was. The institutions are putting doctors, nurses and other employees through customer-service training, hiring "patient experience" consultants and designating staff ombudsmen to handle complaints. The moves follow prodding from Medicare, which now ties payments in part to how patients feel they were treated. The changes, though, benefit all patients.

Heart Attacks Are Being Treated Faster

Speed is of the essence in surviving a heart attack, and in many cities now treatment starts before the patient reaches the hospital. Emergency medical technicians perform electrocardiograms and transmit results wirelessly to the emergency room. New guidelines from the American Heart Association and the American College of Cardiology aim to quickly restore blood flow when an artery is blocked, the most severe type of attack known by the acronym STEMI. Guidelines call for balloon angioplasty and stents as preferred treatments for STEMI, and clot-busting drugs as a stopgap measure. Also recommended: Chilling the patient in cases of cardiac arrest, a practice that reduces subsequent brain injury. In new research, survival rates were higher among cardiac-arrest patients who received CPR longer—a median of 25 minutes versus 16 minutes. For patients, the message is: Don't delay calling 911 when you have symptoms, and avoid going to the hospital in a private car.

ERs Are Getting Better at Handling Medical Mysteries

A growing number of hospital emergency rooms are opening observation units to keep an eye on patients who show up with complaints that can't be quickly or conclusively diagnosed. This reduces crowding in harried ERs. It also allows emergency staff to closely monitor at-risk patients and conduct tests more quickly and cheaply than by admitting them as an inpatient to a hospital room.

You Can Finally See What Your Doctor is Writing About You

Patients who have access to the notes their doctor makes about them are more likely to understand their health issues, recall what the doctor told them, and take medications as prescribed, according to a trial program called Open Notes initiated by several big hospitals and now spreading across the country. Although patients have the right to view doctors' notes, these often aren't included in patient requests for medical records and doctors don't make it easy to see them. In the Open Notes trial, some patients picked up errors. Other patients became more diligent about follow-up actions that eliminated the need for additional office visits, says Thomas Delbanco, a physician at Beth Israel Deaconess in Boston and lead investigator of the study.

Health Apps Are More Sophisticated

Rather than just count calories and monitor exercise, new apps take on more serious concerns. "Is it Contagious?" from the Nemours Foundation has information on some 85 childhood infections and conditions, including info on when to seek immediate medical care. An app from the Centers for Disease Control and Prevention enables searches of health information. Carolinas Medical Center has an app to calculate the risk of pain and discomfort after hernia surgery. MyIBD, from Toronto's Hospital for Sick Children helps those with irritable bowel disease track symptoms and food intake. The nonprofit Pew Research Center says some 19% of smartphone users have at least one health app on their device.

Tests for Colon Cancer Are Less Arduous

Colonoscopy is the gold standard for detecting colon cancer. Yet millions of people who should have one don't, whether out of distaste for the laxative prep regimen or fear of the procedure. Alternatives include a "virtual" colonoscopy, using CT scanning to examine the colon. A new version of the fecal occult blood test analyzes stool samples gathered at home to find polyps, abnormal growths that can become cancerous. Randomized controlled trials have shown the technique reduces colon cancer death rates. Kaiser Permanente mails test kits to its Northern California patients and gets 3,000 samples a day. If test results are positive, colonoscopy is advised.

Talk of Dying Gets a Little Less Daunting

Families and patients are getting help with one of the most difficult care decisions: When to stop invasive and costly treatments and focus on a dignified and comfortable pathway to the end of life. A program known as POLST—Physician Orders for Life-Sustaining Treatment—has been adopted in a growing number of states. It offers a template doctors and patients can use to discuss and record which types of care patients want and which they would rather forgo. Another program, the Conversation Project, created by writer Ellen Goodman, is a way to help people talk about these issues with loved ones around the kitchen table. A starter kit, available free online, helps map out how to think about what matters most, such as being able to recognize family members, and how to talk to family about tough care decisions.

The Hospital Is Less Likely To Make You Sick

The problem of hospital patients who contract potentially fatal infections has dogged providers for years. Medicare has stopped paying to treat some infections acquired in the hospital.A breakthrough came in September with news that a program in 1,100 intensive care units in 44 states reduced the rate of a deadly hospital bloodstream infection by 40% over four years. The remedy seems simple: Doctors and staffers follow a checklist of routine precautions, including washing hands and removing catheters from patients as soon as possible. Peter Pronovost, the Johns Hopkins patient safety expert who oversaw the program, estimated it has saved more than 500 lives and $34 million and will lead to more programs to reduce harm.

Robots Are Helping Your Surgeon

In a growing number of medical schools and hospitals, trainees and staff are learning procedures on lifelike electronic robots that bleed, have seizures, and give birth—all while simulating emergency complications. that requireCare providers practice critical thinking and decision-making under pressure, "without risking the well-being of actual patients," says George Halvorson, outgoing chief executive of Kaiser Permanente. A robot named Noelle can simulate a birth emergency while the multitalented SimMan has the ability to present realistic human responses to heart attack, stroke or respiratory distress. Studies show that simulation leads to enhanced teamwork and crisis-management skills of health-care providers.

Vetting a Hospital Gets Easier

Data on hospital quality and safety has been available online for some time, but not in a very user-friendly way. This year, the Leapfrog Group, a coalition of public and private purchasers of employee health coverage, graded hospitals, from A to F, based on measures of patient safety. Some hospitals got poor grades and took issue with the methodology, which was subsequently altered slightly. Leapfrog CEO Leah Binder says it is "the toughest standard-bearer and provides the most complete picture of a hospital's quality and safety." The list of 1,200 hospitals, released Dec. 4, ranks only 89 of them as top facilities. Patients can use a free website or a mobile app to compare hospitals based on overall safety or based on selected procedures such as heart bypass surgery. A research team at Johns Hopkins' Armstrong Institute for Patient Safety and Quality will provide scientific guidance in future.

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Location:Georgetown, Tx

Tuesday, December 18, 2012

Heart Gadgets Test Privacy-Law Limits

Heart Gadgets Test Privacy-Law Limits -
The Wall Street Journal by AMY DOCKSER MARCUS

A recent swell of digital-medical data collected on devices outside of a doctor’s office is raising some thorny questions: Who owns the rights to a patient’s digital footprint and who should control that information? WSJ’s Linda Blake reports.

The small box inside Amanda Hubbard’s chest beams all kinds of data about her faulty heart to the company that makes her defibrillator implant.

Ms. Hubbard herself, however, can’t easily get that information unless she requests summaries from her doctor—whom she rarely sees since losing her insurance. In short, the data gathered by the Medtronic Inc. implant isn’t readily accessible to the person whose heartbeat it tracks.

“This is my health information,” said Ms. Hubbard, 36 years old. “They are collecting it from my chest.”

Amanda Hubbard’s defibrillator collects an array of data about her heart, and she is troubled that she can’t gain direct access to it. ‘This is my health information,’ she says. ‘They are collecting it from my chest.’

The U.S. has strict privacy laws guaranteeing people access to traditional health files. But implants and other new technologies—including smartphone apps and over-the-counter monitors—are testing the very definition of medical records.

Medtronic says federal rules prohibit giving Ms. Hubbard’s data to anyone but her doctor and hospital. “Our customers are physicians and hospitals,” said Elizabeth Hoff, general manager of Medtronic’s data business. Medtronic would need regulatory approval to give patients the data, she said. It hasn’t sought approval because “we don’t have this massive demand.”

At the same time, companies including Medtronic are pushing to turn the data into money. Ms. Hoff said the company is contemplating selling the data to health systems or insurers that could use it to predict diseases and possibly lower their costs. At a July industry event, a senior Medtronic executive, Ken Riff, called these kinds of data “the currency of the future.”

In April, Medtronic created Ms. Hoff’s unit in part to look for business opportunities like these.

The primary purpose of the defibrillator implant in Ms. Hubbard’s body is to zap her irregular heartbeat back to normal if the need arises. The Big Sandy, Tenn., resident first started experiencing heart-disease symptoms in 2009 while in Samoa for the Peace Corps and has had her defibrillator since 2010. Her implant collects details of her heart-rhythm changes, device performance and hundreds of other data points.

The implant works like this: It records and stores data onboard. Wireless monitors in patients’ homes download the files and send them to Medtronic. Doctors can log in to a Medtronic website to review patient reports.

How to Read an Implantable Defibrillator Report

Amanda Hubbard’s implantable defibrillator electronically tracks her heart, and when it beats too fast or too slow, zaps it back to normal. The tiny computer also collects a wealth of data beamed over the internet to the company that makes her device. Whether patients could make use of this data is a topic of hot debate.

View excerpts from a doctor’s summary report, obtained by Ms. Hubbard through her physician, for a glimpse of what patients would get if they had direct access to the data.

Device makers are in a race to design data-gathering implants. Medtronic and its rivals already collect heartbeats from more than one million people with defibrillators. St. Jude Medical Inc. is seeking approval for an implant that crunches numbers to help doctors and patients adjust medication levels.

This would be new territory: Unlike, say, a defibrillator, the St. Jude implant doesn’t deliver treatment itself. Instead, it simply gathers data to be used in making treatment decisions—such as whether a patient should increase medicine dosages.

Medtronic officials say they know some patients want to be more active in their care. “This is the direction where things are going,” said Tim Samsel, vice president of regulatory affairs for the cardiac-rhythm unit.

But to offer reams of data to patients in a useful format, he said, Medtronic “would actually have to design such a thing” and seek Food and Drug Administration approval. That costly process, he said, could take years.

The summary reports seen by doctors highlight measurements such as instances of arrhythmias that increase stroke risk. The devices also gather large amounts of raw data—for instance, measurements used by engineers to assess device performance—that isn’t available to doctors.

Other defibrillator makers also balk at giving data directly to patients. St. Jude said it has no way for patients to access defibrillator data and declined to comment on whether it would give a patient data if asked. Biotronik SE said it would refer patients to their doctors.

Erica Jefferson, an FDA spokeswoman, said the agency supports patient access but would need to review any plan to provide data directly to patients. “In the current format, the data collected from implantable cardiac devices should be relayed through the physician to ensure proper interpretation and explanation,” she said.

Doctors themselves debate whether patients could make use of the data. Some worry it could cause anxiety or even harm if a patient misunderstood the signals. Still, some say that doesn’t matter. “They should have it,” said David Lee Scher, a retired cardiologist who is leading efforts among doctors to help connect patients with device data.

Some legal experts say the 1996 U.S. law governing patient access to their health files—HIPAA, or the Health Insurance Portability and Accountability Act—hasn’t kept up with technology. The law gives patients the right to access information held by doctors and hospitals.

However, the raw data gathered by an implant isn’t held by a doctor or a hospital: Typically it goes directly to the device maker, which provides a summary report to the doctor. Because of this, the raw data falls outside the scope of HIPAA’s patient-access requirements. In addition, Medtronic said, business agreements with doctors and hospitals restrict it to relaying information only to them.

“Is the device itself a depository for medical records?” said Paul C. Zei, a cardiologist at Stanford University Medical Center with a patient, Hugo Campos, who wants the same access to his cardiac-device data as the doctor gets. “Or is it part of the patient, and an extension of vital signs that we download into a medical chart?”

“Sixteen years after the enactment of HIPAA, a lot of changes are probably warranted,” said Paul DeMuro, a Portland, Ore.-based health-care attorney for Schwabe, Williamson & Wyatt.

Device makers do face restrictions on use of this information. They couldn’t, for instance, sell identifiable information to a marketing company.

A community of patients nationwide is fighting for access, arguing the data would help them manage their disease. “If anyone should have the data, it’s me,” said Mr. Campos, 47, a San Francisco Web designer and Dr. Zei’s patient.

Five years ago, he fainted on a train platform. Diagnosed with a heart condition called hypertrophic cardiomyopathy, he got a Medtronic defibrillator.

Mr. Campos says he has gone to lengths to understand the data the device collects. “The geek in me was interested,” he said. He took a two-week, $2,000 class that trains technicians how to read the reports.

Mr. Campos says he wants to track his heart data the same way he does information from other devices he uses, including a Fitbit gadget that counts steps taken and calories burned, a Zeo monitor he wears on his head to analyze sleep patterns and a blood-pressure monitor.

He keeps a spreadsheet to record arrhythmia symptoms and the circumstances—intensity, activities, his mood. He says he has cut out drinking whiskey and coffee based on his spreadsheet.

Currently, his only option is to see his cardiologist, Dr. Zei, who gives Mr. Campos a report. Even with insurance, Mr. Campos says he pays around $350 out-of-pocket, per visit, for two doctor’s visits and device checks per year. “It is like being coerced into paying to get information I should have myself,” he said.

After discussions between Mr. Campos, Dr. Zei and Medtronic, a compromise was reached. Still, it is less than what Mr. Campos sought. While Medtronic won’t give Mr. Campos his summary report directly, or any raw data, Dr. Zei’s office agreed to email Mr. Campos his reports as soon as the office receives them.

Medtronic declined to discuss details of its communications with Mr. Campos but said it was pleased to work with him and other patients “to determine the best path to providing meaningful data to patients.”

Tolu Odomusu, a research fellow at Harvard University’s Science, Technology and Public Policy program, says people have no idea what information their devices collect. He learned only last year after seeing a physician for severe apnea and being given a “continuous positive airways pressure” machine, or CPAP—a mask that delivers oxygen at night—to improve his sleep.

The device, made by Koninklijke Philips Electronics NV, logs sleeping habits. At a six-month follow-up, Dr. Odomusu said he was shocked when his doctor told him, based on the machine, that he slept fewer hours than he believed.

He worries that data he doesn’t know about could somehow be used to his disadvantage. For instance, if he were in a car accident and an insurer wanted to try to blame his sleepiness, “could they get the data from the machine at my home?” he said. “Would that be allowable?”

Privacy law typically would prevent that, said Nicolas Terry, a law professor at Indiana University’s law school. Specifically, he said, laws prevent third parties that aren’t involved in health care, such as auto insurers, from accessing health data collected by prescribed devices unless they get a patient’s OK.

But that isn’t necessarily the case with nonprescribed devices. “You get a very different scenario if you take your iPhone and buy the sleep-monitoring app,” he said. “There is no real law that protects that data.”

A Philips official said a patient who wants data from a CPAP machine can be set up to access from home the same data the doctor sees. The company doesn’t use the data, she said.

Smartphone apps, meanwhile, are now available to collect everything from medical images, such as X-rays, to electrocardiography readings. There is even iDry, an app to help patients manage incontinence.

Apps like these, by definition, collect health-related data about people. But because they don’t necessarily require FDA approval or a doctor’s participation, most fall outside the boundaries of HIPAA restrictions on data use.

The developer of iDry, Jeff Pepper, says for instance that he will provide researchers with detailed, but anonymized, data covering instances of incontinence logged by customers. He said he is voluntarily using HIPAA guidelines to eliminate identifiable information about his users. “Nobody’s going to be able to sell diapers to a particular customer,” Mr. Pepper said.

Apple Inc., which makes tablets and smartphones for which many apps are designed, declined to comment. Its guidelines require app-makers to publish data policies and to obtain users’ permission before transmitting their data to third parties.

Michael Seid, a researcher at Cincinnati Children’s Hospital Medical Center, has been wrestling with privacy in a clinical trial he is running. Twenty teenagers with Crohn’s disease and ulcerative colitis have agreed to have their cellphone use tracked. Doctors want to see if changes in social interaction—decreases in texting and calls—correspond to feelings of sickness.

In 2010, MIT researchers used similar methods to predict health. Studying early-morning and late-night call and text patterns, they could discern if a person was suffering from colds, stress or mild depression.

A company founded by some of the researchers,, is working with Dr. Seid. “Your smartphone leaves a trail of data exhaust wherever you go,” Dr. Seid said, calling it “a continuous measure of health.”

Some members of his research team expressed discomfort with what they see as “Big Brother” aspects of the experiment. He said they raised concerns that insurance companies might insist on such tracking. These are areas of continuing discussion, he said.

At Medtronic, officials say they are looking into ways to capitalize on patient data. The company is developing a matchstick-size monitor, implantable without surgery, that could track measures such as heart rate and arrhythmia that can predict heart disease.

Medtronic’s Ms. Hoff said she can envision a future where employers might require insured workers with a family history of heart disease to have the device implanted or face higher insurance premiums. She said the company has also contemplated whether it could sell analytics services to hospitals seeking to predict worsening heart disease. But those efforts are nascent, she said.

“I would love to build a more consumer-oriented business,” Ms. Hoff said, but the company doesn’t believe demand for such a service yet exists.

Ms. Hubbard, the Tennessee patient, says she didn’t think about any of this until she saw posts by Mr. Campos online describing his efforts to get Medtronic reports. Ms. Hubbard has Long QT Syndrome, which causes rapid heartbeats that can trigger a seizure, fainting or death.

Ms. Hubbard, whose insurance ran out in mid-2011, when her eligibility for Peace Corps coverage expired, said she began wondering, if she wasn’t regularly seeing a doctor, “Who gets my information? What happens to my data?” In August she asked Medtronic for the data. The company told her to talk to her doctor.

When she called the cardiologist at Vanderbilt University Medical Center who put in her implant, the office told her she must come in for a checkup to get her reports, which she did.

The doctor who implanted her device, Pablo Saavedra, said that since Ms. Hubbard hadn’t been coming in for checkups, the information sat in the Medtronic system without doctors knowing what was there. At her checkup, diagnostic tests detected a problem: The electrode attached to her heart had become dislodged. Dr. Saavedra says there was a chance it wouldn’t have shocked her heart when needed.

Ms. Hubbard had surgery last month to fix that. And she plans to keep trying to get reports sent to her directly. “If I had been able to follow my own reports, I would not have walked around for an entire year with a potentially dangerous problem,” she said.

A version of this article appeared November 29, 2012, on page A1 in the U.S. edition of The Wall Street Journal, with the headline: Heart Gadgets Test Limits Of Privacy Laws on Health.

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Location:Georgetown ,Tx

Friday, December 14, 2012

A personal insight into cancer

I have been married for going on 51 years, I always knew this woman was tough as most nurses are, but that spiritual stamina was sorely tested 6 months ago with the diagnosis of lung cancer.

Since that time she has completed one four month tour of Chemo Therapy, with the trials and tribulations that entails. It wasn't the nausea, there was none, nor was it sleep issues that got her down, it was the fatigue and neuropathy that pressed her spirit down, but she kept pushing on.

It has been four months since the port was put in and chemotherapy was started. The therapy plan the oncologist used delivered results and she is now on a chemo “vacation” for three months.

I do not write this to expose our personal battle with this disease, but to emphasize the wonders of modern medicine. What was once the scourge of chemo therapy, nausea, is all but eliminated today. What once was treating cancer with a shotgun approach, is now treated with a proton beam. What was once a sure death sentence is a conclusion that in many cases may no longer be true. Finally what was a one size fits all approach is moving toward individual based approach.

We may or may not win this battle only time and the good Lord will tell. What I can say with certainty is that we will have more quality time together then we would have had a decade ago. That being true, just think what the case will be in the next decade.

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Location:Georgetown TX