DiversityNursing Blog

Written by Honor Whiteman

www.medicalnewstoday.com 

Progeria or Hutchinson-Gilford Progeria Syndrome (HGPS), affects around 1 in 4-8 million newborns worldwide. There are approximately 200-250 children living with the condition across the globe at any one time.

Progeria is caused by an abnormal protein in the LMNA gene, called progerin, which interferes with the production of lamin A - a protein that stabilizes a cell's nucleus. This disruption causes children with progeria to age up to 10 times faster than normal.

On Thursday evening, it was announced that 17-year-old progeria sufferer Hayley Okines - from Medical News Today's hometown Bexhill in East Sussex, England - had passed away.

Hayley's mother, Kerry Okines, posted the sad news on Facebook: "My baby girl has gone somewhere better. She took her last breath in my arms at 9.39 pm."

Hayley - who BBC News say had the "body of a 104-year-old" - was being treated in the hospital for pneumonia, but she returned home shortly before she died. "She came home for an hour and she saw her puppies, little brother Louie and her sister Ruby," Hayley's father, Mark Okines, told BBC News on Friday.

"I think she wanted to come home to say goodbye to everybody," he continued. "I think she knew that yesterday was going to be the time."

'We remember her tremendous courage and determination'

Children with progeria rarely live past the age of 14, often passing away from ailments that affect the elderly, such as heart disease and stroke. 

Hayley was told she would not live past the age of 13, but in 2007, the teenager began undergoing pioneering treatment at Boston Children's Hospital, MA, as part of the first clinical trial for the condition.

In September 2012, MNT reported on the success of this trial, revealing how a farnesyltransferase inhibitor (FTI) improved the weight, bone structure and cardiovascular health of children with progeria.

In a statement following Hayley's death, the Progeria Research Foundation praised the teenager for her contribution to progeria research:

"The entire PRF community mourns the loss of one of our shining stars, Hayley Okines. Hayley was one of the first participants in the ongoing progeria clinical trials. Hayley was a pioneer - and one of the reasons that we now have the first treatment for progeria. Today we remember her tremendous courage and determination."

Hayley was an avid campaigner for progeria awareness, hailed locally and nationally as an inspiration for people with and without the condition. The teenager penned two books detailing her experiences of living with progeria - "Old Before My Time" and "Young at Heart" - and took part in numerous interviews.

As well as for her contribution to progeria awareness and research, Hayley was highly admired for her positive outlook on life, writing in "Young at Heart:"

"My life with progeria is full of happiness and good memories. Deep inside I am no different from anyone. We are all human."

Our thoughts and prayers are with Hayley's family and friends at this difficult time.

The news of Hayley's death comes just 15 months after it was announced Sam Burns, a boy from Foxborough, MA, had died from progeria aged 17.

By SYDNEY LUPKIN

abcnews.go.com

The Easter Bunny has some sweet competition in the form of two therapy rabbits at NYU Langone Medical Center in Manhattan.

Nutmeg and Clovis, both 5 years old, live on the 13th floor of the hospital, and this week, they visited patients for Bunny Day, the hospital's nondenominational springtime celebration. They wore rabbit ears (yes, really), a bonnet, and sat on a basket of eggs.

"The bunny cart is decorated to the hilt, and then we'll go and see patients and work with patients," said Gwenn Fried, manager of horticultural therapy services at NYU Langone. "The patients adore it."

As she travels the hospital with one rabbit at a time (Rabbits need breaks, too!), she said she hands patients a plastic Easter egg, and it contains either a sticker or a bunny treat.

"The bunny is very excited about the bunny treat," she laughed.

The bunnies visited 15 patients on Thursday and will visit more today and tomorrow, Fried said.

The rabbits are part of a therapy program that's been at the hospital for about 13 years. Sometimes, doctors recommend the bunny therapy, and sometimes patients request it, but Fried said she's seen them work magic on children and adults alike.

"One dad just said, 'I really think Clovis changed our lives,'" Fried told ABC News last year. "He's the most patient animal I've ever seen in my life."

By Michelle Matthews

Source: www.al.com

Shortly before their baby, Eli, was born, Brandi McGlathery and Troy Thompson talked about the physical qualities they hoped he would possess.

"I said I wanted him to have blond hair," Brandi said. "And Troy said, 'I hope he doesn't get my nose.'"

At the time, it was just a joke between two parents anxiously awaiting their baby's arrival. After Eli was born, though, it became the kind of memory that now makes them wince at its irony.

When Eli was born at South Baldwin Hospital on March 4, weighing 6 pounds, 8 ounces, Dr. Craig Brown immediately placed him on Brandi's chest. As the doctor helped Troy cut the cord, Brandi looked at Eli for the first time.

"I pulled back and said, 'Something's wrong!' And the doctor said, 'No, he's perfectly fine.' Then I shouted, 'He doesn't have a nose!'"

The doctor whisked Eli away, and for about 10 minutes Brandi was left alone in the delivery room thinking surely she hadn't seen what she thought she saw - or didn't see.

When Dr. Brown returned, he put his arm on her bed and took a deep breath. "He had the most apologetic look," she said. She knew something was wrong with her baby. She started to cry before he said a word.

She looked to Troy, who, she said, never cries. He had tears in his eyes.

She'd been right. Eli didn't have a nose.

Meanwhile, he had started breathing through his mouth right away. She remembers that he was wearing a tiny oxygen mask. Not having a nose "didn't faze him at all," she said.

"I was the first person to see it," she said. "Even when they took him away, my family still didn't know something was wrong, due to being caught up in the excitement of his arrival. It wasn't until they opened the blinds of the nursery that everyone else saw."

Before she knew it, Eli was taken to USA Children's and Women's Hospital in Mobile. Throughout the night, Brandi called the number they'd given her every 45 minutes or so to check on her baby. She wasn't sure he would make it through the night -- but he did.

And her "sweet pea," her "miracle baby," has been surprising his parents and others who love him, as well as the medical staff who have cared for him, ever since.

Nothing unusual

The next day, her doctor checked her out of the hospital in Foley so she could be with her baby in Mobile. The doctor had also had a sleepless night, she said. "He said he'd gone back over every test and every ultrasound," but he couldn't find anything unusual in her records.

There were a few aspects of her pregnancy that were different from her first pregnancy with her 4-year-old son, Brysen.

Right after she found out he was a boy, at around 17 weeks, she said, she lost 10 pounds in eight days because she was so severely nauseated. Her doctor prescribed a medication that helped her gain the weight back and keep her food down. She continued to take the medication throughout her pregnancy, she said.

On a 3D ultrasound, she and Troy even commented on Eli's cute nose. The imaging shows bone, not tissue, she said - and he has a raised bit of bone beneath the skin where his nose should be.

After going into early labor three times, Brandi delivered Eli at 37 weeks. At 35 weeks, her doctor told her that the next two weeks would be critical to the development of the baby's lungs and respiratory system. "He said, 'Let's try to keep him in as long as we can,'" she remembered.

Happy, healthy baby

For the first few days of his life, Eli was in one of the "pods" in USA Children's and Women's Hospital's neonatal intensive care unit. At five days old, he had a tracheotomy. "He has done wonderfully since then," Brandi said. "He's been a much happier baby."

Because of the trach, he doesn't make noise when he cries anymore, so Brandi has to watch him all the time. She has been going back and forth between the Ronald McDonald House and Eli's room during his stay.

"Between the nurses here and Ronald McDonald House, everyone has gone above and beyond," she said. "The nurse from the pod comes to check on her 'boyfriend.' She got attached to him."

Besides not having an external nose, he doesn't have a nasal cavity or olfactory system. (Despite that fact, she said, he sneezes. "The first time he did it, we looked at each other and said, 'You heard that, right?'")

Eli Thompson has an extremely rare condition known as complete congenital arhinia, said Brandi, adding that there are only about 37 cases worldwide like his. The chance of being born with congenital arhinia is one in 197 million, she said.

Even at USA Children's and Women's Hospital, Eli's case has baffled the NICU. "Everyone has used the same words," Brandi said. As soon as they found out he was on his way, she said, the staff started doing research. They only found three very brief articles on the condition. Now, his doctors are writing a case study on him in case they ever encounter another baby like Eli.

After he got the trach, Brandi wanted to start breastfeeding. The lactation consultant encouraged her, and together they searched the Internet for more information. Brandi became the first mother ever to breastfeed a baby with a trach at the hospital, she said - and now the lactation consultant "is actually using him to put an article together about breastfeeding with a trach to encourage mothers of other trach babies to attempt it."

Thanks to her Internet research, Brandi found a mother in Ireland, Gráinne Evans, who writes a blog about her daughter, Tessa, who has the same condition as Eli. She also found a 23-year-old Louisiana native who lives in Auburn, Ala., and a 16-year-old in North Carolina, she said. With every case she found, Brandi started to feel better and more convinced that Eli could not only survive his babyhood, but that he'll grow to adulthood.

Communicating with Tessa's mother in Ireland has been especially gratifying for Brandi. She knows she and Eli are not in this alone.

'He's perfect'

While it would seem easy enough for a plastic surgeon to build a nose for Eli, it's not that simple, Brandi said. "His palate didn't form all the way, so his brain is lower," she said. "It's a wait-and-see game."

His condition affects his pituitary gland, she said. He'll have to be past puberty before his nasal passageways can be built. Until then, she'd like to spare him any unnecessary facial surgeries.

"We think he's perfect the way he is," she says, nodding toward the sweet, sleeping baby in his crib. "Until the day he wants to have a nose, we don't want to touch him. We have to take it day by day."

Within a month after Eli goes back home to Summerdale, he will have to travel to the Shriners Hospital for Children in Houston and Galveston, Texas, to meet with craniofacial specialists. "They will work with him for the rest of his life," she said. "Every three to six months, we'll be going back for scans and checkups for at least the next ten years."

Brandi said that, of the people she's found online, some are opting to have noses and nasal passageways built (including Tessa), while others haven't.

"We're going to do our best to make sure he's happy," she said. "The rest of him is so cute, sometimes you don't realize he doesn't have a nose."

Brandi's older son, Brysen, and Troy's four-year-old daughter, Ava, are too young to interact with Eli in the hospital. Brandi was grateful to one of the nurses who unhooked him and let the kids see him. "Ava asked me, 'When you were little, did you have a nose?'" Brandi said. "She said, 'I think he's cute.'"

Brysen pressed his hands against the window separating him from his baby half-brother and said, "He's perfect!"

'Facebook famous'

Brandi, who got pregnant with Brysen when she was a senior in high school, had planned to start going to school to become an LPN like Troy's sister and his mother. "That's all on the back burner now," she said. Because of her experience at USA Children's and Women's, she said she now wants to be a NICU nurse.

Her best friend, Crystal Weaver, logged onto Brandi's Facebook account and created the Eli's Story page to let friends and family members know what was going on. "It's easier that way to update everyone at once rather than to call everyone individually," Brandi said. "It's overwhelming. It's all on my shoulders." Within a day, she said, Eli's Story had 2,000 likes (it now has around 4,500). "People I didn't know were sending messages," she said.

Crystal also started a Go Fund Me account, which has raised about $4,300. "We've got years and years of surgeries and doctor's appointments nowhere close to us," said Brandi, who returned to her job as a bartender this past weekend. She plans to keep working two nights a week for a while. Being around her work family, she said, helps her maintain a sense of normalcy.

A fish fry is planned as a fundraiser for Eli's medical fund on April 11 at Elberta Park in Elberta, with raffles for prizes including a weekend stay at a condo in Gulf Shores and a charter fishing trip.

"It makes me feel really good that I have a support system," Brandi said. "Everybody's been awesome."

Updating Eli's page, adding photos and reading the positive, encouraging comments from hundreds of people, as well as reaching out to others who have been through what she's going through "keeps me sane," Brandi said.

Recently, Brandi posted a video of Eli waking up from a nap. From Ireland, Gráinne Evans commented: "I've actually watched this more times than I could admit!"

Eli is "100 percent healthy," she said. "He just doesn't have a nose. He has a few hormone deficiencies, but other than that he's healthy."

Brandi seems wise beyond her years. She is already worried about "the day he comes home and someone has made fun of his nose," she said. "We don't want anyone to pity him. We never want anyone to say they feel sorry for him. If other people express that, he'll feel that way about himself."

She jokes that Eli is "Facebook famous" now. "I can't hide him," said Brandi, who is a singer. "Eli's gotten more publicity in the past two weeks than I have in my whole life!"

She's been putting together a "journey book" full of medical records and mementoes to give Eil one day. "I'm excited to show him one day, 'Look, from the moment you were born people were infatuated with you.'"

'I'm doing something right'

In his short time on earth so far, Eli has brought his family together, Brandi said. She and Troy had been engaged, then called off the wedding and were "iffy," and then they broke up. A week later, she found out she was pregnant.

"Eli has made Troy my best friend," she said. "He has brought us closer than when we were engaged. To see Troy with him is really awesome."

Troy has been her rock, reassuring her since Eli was born, she said. "He tells me, 'Brandi, it's OK. It will end up happening the way it's supposed to be."

Last Thursday, Brandi posted on the Eli's Story page that Eli had passed his car seat trial and newborn hearing screening. "He now weighs 7 pounds, and we'll be meeting with home health to learn how to use all of his equipment so we can go home Monday."

Everyone in their family has taken CPR classes, and Brandi and Troy have learned how to care for Eli's trach. The couple has extended family nearby, and Troy's father and stepmother plan to move to Baldwin County from Mobile to be closer to Eli.

As she prepared to take her baby home from the hospital on Monday morning, almost four weeks since he came into the world, Brandi was excited to take care of him for the first time in the comfort of her own home, and to finally introduce him to his big brother and sister.

Though Brandi said her heart melts when Eli's little hand wraps around her finger, he's the one who already has her wrapped completely around his. He recognizes his parents' voices, and seems comforted by them. "As soon as he hears us, he looks around for us, finds us, then stares at us smiling," she said. "It makes me feel like I'm doing something right, that through the ten to twelve other women, the nurses who have been caring for him for the past month, he still knows who Mommy is!"

Shefali Luthra

Source: www.cnn.com

You know the one. It might as well have been stitched together with paper towels and duct tape, and it usually leaves the wearer's behind hanging out.

"You're at the hospital because something's wrong with you -- you're vulnerable -- then you get to wear the most vulnerable garment ever invented to make the whole experience that much worse," said Ted Streuli, who lives in Edmond, Okla., and has had to wear hospital gowns on multiple occasions.

Put another way: "They are horrible. They are demeaning. They are belittling. They are disempowering," said Camilla McRory of Olney, Md.

Hospital gowns have gotten a face-lift after some help from fashion designers like these from Patient Style and the Henry Ford Innovation Institute.

The gowns are among the most vexing parts of being in the hospital. But if efforts by some health systems are an indicator, the design may be on its way out of style.

The Cleveland Clinic was an early trendsetter. In 2010, it introduced new gowns after being prompted by the CEO, who often heard patient complaints when he was a practicing heart surgeon. That feedback led to a search for something new, said Adrienne Boissy, chief experience officer at the hospital system.

The prominent academic medical center ultimately sought the help of fashion icon Diane von Furstenberg, settling on a reversible gown with a front and back V-neck, complete derriere coverage, and features such as pockets, softer fabric and a new bolder print pattern.

Patients "loved the gowns," Boissy said. "People felt much more comfortable in the new design, not just physically but emotionally." In recent years, she added, "hospitals are looking at everything they do and trying to evaluate whether or not it contributes to enhancing the patient experience." 

It's all part of a trend among hospitals to improve the patient reviews and their own bottom lines -- fueled in part by the health law's focus on quality of care and other federal initiatives. The Centers for Medicare & Medicaid Services increasingly factors patients' satisfaction into its quality measures, which are linked to the size of Medicare payments hospitals get.

Sometimes the efforts involve large capital improvement projects. But they can also mean making waiting rooms more comfortable, improving the quality of food served to patients or, as in this case, updating hospital gowns.

Ultimately, this focus leads to "a better patient experience," said John Combes, senior vice president of the American Hospital Association.

The Detroit-based Henry Ford Health System is in the process of updating its gowns, an initiative that began when the system's innovation institute challenged students at the city's College for Creative Studies to identify and offer a solution to one hospital problem.

The students responded with the suggestion to redo the garment that has often been described by patients as flimsy, humiliating, indecent and itchy. The process took three years, but last fall, the institute unveiled a new and improved version. It's made of warmer fabric -- a cotton blend -- that wraps around a patient's body like a robe and comes in navy and light blue, the hospital's signature colors.

Patient expectations are part of the calculus. They "are demanding more privacy and more dignity," said Michael Forbes, a product designer at the Henry Ford Innovation Institute.

When the institute tested his gown design, Forbes said, patient-satisfaction scores noticeably increased in a few days.

The new gown "was emblematic...of an attitude that was conveyed to me at the hospital -- that they cared about me as a whole human being, not just the part they were operating on," said Dale Milford, who received a liver transplant during the time the redesign was being tested. "That was the subtext of that whole thing, was that they were caring about me as a person and what it meant for me to be comfortable."

But replacing the traditional design is no easy task. What patients wear needs to be comfortable yet allow health professionals proper access during exams, meaning it must open and close easily. The gowns also need to be easily mass-manufactured, as well as efficiently laundered and reused.

New designs, though, can be expensive. After Valley Hospital of Ridgewood, N.J., switched to pajamas and gowns that provide extra coverage, costs went up $70,000 per year, said Leonard Guglielmo, the facility's chief supply chain officer, because the new garments cost more to buy and maintain.

Beyond cost, more ingrained cultural expectations might also play a role in what hospitals think patients should wear, said Todd Lee, an assistant professor of medicine at McGill University, who co-authored a 2014 study in the journal JAMA Internal Medicine, examining whether gowns were important and whether patients might be fine wearing their own or hospital-provided pants, instead of or along with gowns.

Often, doctors reported that pants or undergarments beneath gowns would have been okay, but patients said they were never given those options. Traditional gowns make it easier to examine patients quickly, and several doctors Lee spoke to seemed shocked at the idea that patients might wear garments other than the open-backed gown during their stay.

But the most common challenge isn't necessarily doctor expectations or costs. It's navigating hospital bureaucracies, said Dusty Eber, president of the California-based company PatientStyle, which designs and sells alternative gowns. In his company's experience, hospital decisions are often made by committees, not individuals.

By GILLIAN MOHNEY

Source: http://abcnews.go.com

An Indiana couple is celebrating an extra-special arrival with the birth of their identical triplet daughters.

Ashley and Matt Alexander of Greenfield, Indiana, were surprised weeks ago when they learned they were expecting three new additions to their family during a routine sonogram, according to ABC affiliate WRTV-TV in Indianapolis, Indiana.

"She was checking [Ashley] and right away there were twins, and she goes, 'Let me check for a third,'" Matt Alexander told WRTV-TV in an earlier interview. "I'm like, she's just joking. I said, 'You're joking,' and she said, 'No, we don't joke about this stuff.' So [Ashley] about came off the table."

The couple, who already have a son, had conceived the triplets naturally, so they were not expecting to see three heartbeats on the sonogram.

Ashley Alexander told WRTV-TV she has a plan to tell the girls apart.

"I'm painting their nails," she said. "One's going to be pink, one purple, and the other probably pale blue."

Dr. William Gilbert, the director of women's services for Sutter Health in Sacramento, California, said in an earlier interview with ABC News there was no definite rate for the number of identical triplets born every year.

"It's hard to calculate a conservative estimate," Gilbert said about the rate of naturally conceived identical triplets. "One in 70,000 - that would be on the low end. The high end is one in a million."

Dr. Edward Soffen

Source: www.livescience.com

Dr. Edward Soffen is a board-certified radiation oncologist and medical director of the Radiation Oncology Department at CentraState Medical Center's Statesir Cancer Center in Freehold, New Jersey. He contributed this article to Live Science's Expert Voices: Op-Ed & Insights.

As a radiation oncologist, my goal is to use radiation as an extremely powerful and potent tool to eradicate cancer tumors in the body: These techniques save and extend patients' lives every day. 

Historically, radiation treatments have been challenged by the damage they cause healthy tissue surrounding a tumor, but new technologies are now slashing those risks.

How radiation therapies work

High-energy radiation kills cancer cells by damaging DNA so severely that the diseased cells die. Radiation treatments may come from a machine (x-ray or proton beam), radioactive material placed in the body near tumor cells, or from a fluid injected into the bloodstream. A patient may receive radiation therapy before or after surgery and/or chemotherapy, depending on the type, location and stage of the cancer. 

Today's treatment options target radiation more directly to a tumor — quickly, and less invasively — shortening overall radiation treatment times. And using new Internet-enabled tools, physicians across the country can collaborate by sharing millions of calculations and detailed algorithms for customizing the best treatment protocols for each patient. With just a few computer key strokes, complicated treatment plans can be anonymously shared with other physicians at remote sites who have expertise in a particular oncologic area. Through this collaboration, doctors offer their input and suggestions for optimizing treatment. In turn, the patient benefits from a wide community of physicians who share expertise based upon their research, clinical expertise and first-hand experience. 

The result is safer, more effective treatments. Here are five of the most exciting examples:

1. Turning breast cancer upside down

When the breast is treated while the patient is lying face down, with radiation away from the heart and lungs, a recent study found an 86 percent reduction in the amount of lung tissue irradiated in the right breast and a 91 percent reduction in the left breast. Additionally, administering prone-position radiation therapy in this fashion does not inhibit the effectiveness of the treatment in any way.

2. Spacer gel for prostate cancer

Prostate cancer treatment involves delivering a dose of radiation to the prostate that will destroy the tumor cells, but not adversely affect the patient. A new hydrogel, a semi-solid natural substance, will soon be used to decrease toxicity from radiation beams to the nearby rectum. The absorbable gel is injected by a syringe between the prostate and the rectum which pushes the rectum out of the way while treating the prostate. As a result, there is much less radiation inadvertently administered to the rectum through collateral damage. This can significantly improve a patient's daily quality of life — bowel function is much less likely to be affected by scar tissue or ulceration. [Facts About Prostate Cancer (Infographic )]

3. Continual imaging improves precision

Image-Guided Radiation Therapy (IGRT) uses specialized computer software to take continual images of a tumor before and during radiation treatment, which improves the precision and accuracy of the therapy. A tumor can move day by day or shrink during treatment. Tracking a tumor's position in the body each day allows for more accurate targeting and a narrower margin of error when focusing the beam. It is particularly beneficial in the treatment of tumors that are likely to move during treatment, such as those in the lung, and for breast, gastrointestinal, head and neck and prostate cancer. 

In fact, the prostate can move a few millimeters each day depending on the amount of fluid in the bladder and stool or gas in the rectum. Head and neck cancers can shrink significantly during treatment, allowing for the possibility of adaptive planning (changing the beams during treatment), again to minimize long term toxicity and side effects.

4. Lung, liver and spine cancers can now require fewer treatments 

Stereotactic Body Radiation Therapy (SBRT) offers a newer approach to difficult-to-treat cancers located in the lung, liver and spine. It is a concentrated, high-dose form of radiation that can be delivered very quickly with fewer sessions. Conventional treatment requires 30 radiation treatments daily for about six weeks, compared to SBRT which requires about three to five treatments over the course of only one week. The cancer is treated from a 3D perspective in multiple angles and planes, rather than a few points of contact, so the tumor receives a large dose of radiation, but normal tissue receives much less. By attacking the tumor from many different angles, the dose delivered to the normal tissue (in the path of any one beam) is quite minimal, but when added together from a multitude of beams coming from many different planes, all intersecting inside the tumor, the cancer can be annihilated. 

5. Better access to hard-to-reach tumors

Proton-beam therapy is a type of radiation treatment that uses protons rather than x-rays to treat cancer. Protons, however, can target the tumor with lower radiation doses to surrounding normal tissues, depending on the location of the tumor. It has been especially effective for replacing surgery in difficult-to-reach areas, treating tumors that don't respond to chemotherapy, or situations where photon-beam therapy will cause too much collateral damage to surrounding tissue. Simply put, the proton (unlike an x-ray) can stop right in the tumor target and give off all its energy without continuing through the rest of the body. One of the more common uses is to treat prostate cancer. Proton therapy is also a good choice for small tumors in areas which are difficult to pinpoint — like the base of the brain — without affecting critical nerves like those for vision or hearing. Perhaps the most exciting application for this treatment approach is with children. Since children are growing and their tissues are rapidly dividing, proton beam radiation has great potential to limit toxicity for those patients. Children who receive protons will be able to maintain more normal neurocognitive function, preserve lung function, cardiac function and fertility. 

While cancer will strike more than 1.6 million Americans in 2015, treatments like these are boosting survival rates. In January 2014, there were nearly 14.5 million American cancer survivors. By January 2024, that number is expected to increase to nearly 19 million. 

But make no mistake — radiation therapy, one of the most powerful resources used to defeat cancer, is not done yet. As we speak, treatment developments in molecular biology, imaging technology and newer delivery techniques are in the works, and will continue to provide cancer patients with even less invasive treatment down the road.

Source: www.livescience.com

By Kenneth Corbin

Source: www.cio.com

There is no shortage of interest in mobile health applications, which span everything from pedometers to Wi-Fi-enabled pacemakers, but what happens with all that data?

The New American Foundation, a Washington think tank, waded into that debate with a pair of recent panel discussions where experts acknowledged that the security risks around health IT systems are high, and the medical profession, as a whole, has a ways to go to get its cyber house in order.

Kevin Fu, who directs the Archimedes Research Center for Medical Device Security at the University of Michigan, argues that within the medical community -- as in many other industries -- there is a broad lack of awareness about basic cybersecurity practices, often enabling garden-variety malware to infiltrate systems that house sensitive data.

All industries need better cybersecurity hygiene

"Medical professionals are not too different from every other person in the country when it comes to cybersecurity hygiene. So they're taught to wash their hands in between patient encounters, but they're not taught as well as to the cybersecurity hygiene. I'd say we have a very long way to go," Fu says. "The bar is very low right now."

The glut of health data being generated and collected by mobile devices and applications also raises some significant privacy concerns, particularly when that information is outside of the scope of HIPAA and other federal statutes governing personal information.

"I think the key risk that we have is that we will create a pool of extremely sensitive health data that is totally unregulated and that is shared broadly without our knowledge and used in ways that we do not know," says Alvaro Bedoya, executive director of the Center on Privacy and Technology at Georgetown University.

Some mobile health apps are protected by privacy law, some are not

"We tend to talk about m-health apps and devices as if they're one thing. When it comes to privacy, there's two kinds of mHealth apps and devices. There's the kind that's protected by privacy law, and there's a kind that's not," Bedoya says.

Many consumers, Bedoya argues, consider the information collected by popular fitness applications like Fitbit as benign, taking innocuous measurements of things like steps and distance walked. However, he maintains that mobile health applications as a class are becoming more sophisticated, and vacuuming up information like glucose levels, heart rate and fertility, all while operating unchecked by the statutory restrictions that apply to information collected in a medical setting.

Pooled together, those data points could provide potential indicators for conditions such as obesity or Alzheimer's. But the market for that data is fairly opaque, and Bedoya fears that health information in the hands of data brokers could be sold to businesses for dubious purposes, such as insurance companies that might deny applicants coverage or charge steeper premiums based on information collected through health apps.

"Frankly, I'm quite scared about what's happening today," Bedoya said. "We don't know what these folks do with this data."

And yet, the policy response has been lacking. Consumer privacy legislation that would set new parameters for the commercial sector hasn't seen serious consideration in recent sessions of Congress, and the near-term prospects for breaking that "legislative stasis," as Bedoya puts it, are not bright.

"There is a sad fact in commercial privacy," he says. "Nothing's happening and nothing's going to happen" in the U.S. Congress.

Privacy advocates call on FTC to pursue consumer protections from mobile device data brokers

As a privacy advocate, Bedoya is calling on state legislatures and regulators at the Federal Trade Commission, which has signaled its concerns about both mobile devices and the practices of data brokers, to take up the issue and press forward with consumer protections.

However, some officials at the federal level caution that the promise of health IT applications has always been hampered by interoperability issues, and that that challenge could only be exacerbated should states go in their own direction in passing privacy laws.

"As we try to build standards for how the healthcare system will operate with technology, if we have rules that vary from state to state, it's just monumentally harder to build a nationwide system because Texas is doing something different from California," says Lucia Savage, chief privacy officer at the Office of the National Coordinator for Health IT, a division of the Department of Health and Human Services.

Nevertheless, experts stress the importance of getting the legal and regulatory structure right. Fu makes the practical point that the adoption of health IT applications, and their potential to improve care and even save lives, could flag if consumers and providers are spooked about privacy and security issues.

"My biggest concern is what happens if patients begin to not accept medical care because of fears of cybersecurity problems," Fu said. "I think it will be a real tragedy if we are not able to give patients the confidence to accept the recommendations of their physicians and their medical teams."

By ALEXANDRA ALTER

Source: www.nytimes.com

It may surprise fans of Johanna Basford’s intricately hand-drawn coloring books that the artist is, by her own admission, “pretty bad” at coloring.

“I can’t stay in the lines,” she said sheepishly.

Not that it matters. Ms. Basford’s coloring book “Secret Garden,” a 96-page collection of elaborate black-and-white ink drawings of flowers, leaves, trees and birds, has become a global best-seller.

Since its release in spring 2013, “Secret Garden” has sold more than 1.4 million copies in 22 languages. It shot to the top of Amazon’s best-seller list this month, overtaking books by authors like Harper Lee, Anthony Doerr and Paula Hawkins. Her follow-up, “Enchanted Forest,” which came out in February, is briskly selling through its first print run of nearly 226,000 copies.

What makes Ms. Basford’s breakout success all the more surprising is her target audience: adults who like coloring books.

There are, it seems, a lot of them. Though it is tempting to describe the market for her books as niche, Ms. Basford, a 31-year-old illustrator in Aberdeenshire, Scotland, has quickly outgrown that label.

Like Play-Doh, jungle gyms and nursery rhymes, coloring books have always seemed best suited for the preschool set. So Ms. Basford and her publisher were surprised to learn that there was a robust — and lucrative — market for coloring books aimed at grown-ups. When they first tested the waters with “Secret Garden” a year ago, they released a cautiously optimistic first printing of 16,000 books.

“I thought my mom was going to have to buy a lot of copies,” Ms. Basford said. “When the sales started to take off, it was a real shock.”

Surging demand caught Ms. Basford and her publisher off guard. Fan mail poured in from busy professionals and parents who confided to Ms. Basford that they found coloring in her books relaxing. More accolades flowed on social media, as people posted images from their coloring books.

Hard-core fans often buy several copies of her books at a time, to experiment with different color combinations. Others have turned it into a social activity. Rebekah Jean Duthie, who lives in Queensland, Australia, and works for the Australian Red Cross, says she regularly gathers with friends for “coloring circles” at cafes and in one another’s homes.

“Each page can transport you back to a gentler time of life,” she said of Ms. Basford’s books in an email.

Ms. Basford has become something of a literary celebrity in South Korea, where “Secret Garden” has sold more than 430,000 copies, she says. The craze was kicked off in part, it seems, by a Korean pop star, Kim Ki-bum, who posted a delicately colored-in floral pattern from Ms. Basford’s book on Instagram, where he has 1.8 million followers.

Part of the apparent appeal is the tactile, interactive nature of the books, which offer respite to the screen-weary. “People are really excited to do something analog and creative, at a time when we’re all so overwhelmed by screens and the Internet,” she said. “And coloring is not as scary as a blank sheet of paper or canvas. It’s a great way to de-stress.”

Ms. Basford started out in fashion, working on silk-screen designs. Then she opened a studio on her parents’ trout and salmon farm in Scotland, and began designing hand-drawn wallpaper for luxury hotels and boutiques. When the financial crisis hit, her business evaporated. She closed the studio and found work as a commercial illustrator for companies like Starbucks, Nike and Sony.

Her publishing break came in 2011, when an editor at Laurence King Publishing discovered her work online. The editor thought her graceful illustrations could work well as a children’s coloring book.

“I came back and said I would like to do a coloring book for grown-ups, and it got a bit quiet for a moment,” Ms. Basford said. “Coloring books for adults weren’t as much of a thing then.”

To convince them that it was a viable market, she drew five sample pages of detailed, mosaic-like illustrations. The publishers were sold.

“When Johanna first approached us with the idea, we knew that people would love her illustrations as much as we did, but could never have predicted just how big the adult coloring trend would be,” said Jo Lightfoot, editorial director of Laurence King Publishing.

Ms. Basford spent the next nine months working on the book at night and freelancing as an illustrator during the day. Occasionally she had doubts. “I was worried that coloring for adults was silly and it was just me that wanted to do it,” she said.

It turns out she was far from alone. Other entries to this small but growing category include Patricia J. Wynne’s lavish, nature-themed Creative Haven coloring books — discreetly described as being “designed for experienced colorists” — and the more explicitly titled “Coloring Books for Grownups,” released by Chiquita Publishing. A subspecies of these books promote the meditative aspects of coloring and doodling, including “Color Me Calm” (subtitle: “A Zen Coloring Book”) and books that promise “Easy Meditation Through Coloring.”

Major publishers are seizing on the trend. This year, Little, Brown will release four illustrated coloring books for adults, all subtitled “Color Your Way to Calm.” The books, “Splendid Cities” by the British artists Rosie Goodwin and Alice Chadwick and three titles by the French illustrator Zoé de Las Cases, feature detailed cityscapes with famous landmarks, cafes and street life. Promotional materials for the books emphasize the health benefits of “mindful coloring,” noting that the activity “has been shown to be a stress reliever for adults.”

Ms. Basford is now working on her third book, after soliciting suggestions for themes from fans. A vocal faction has requested an ocean-themed coloring book. “I’ve been drawing starfish and seahorses this afternoon,” she said.

In the meantime, “Secret Garden” has sold out in many markets, to the consternation of fans. Laurence King is reprinting 75,000 copies for the United States.

This month, Ms. Basford tried to calm her followers with a post on her Facebook page, promising that newly printed books would be shipping in a few weeks: “Don’t panic! New stock of Secret Garden and Enchanted Forest is on its way!”

Some were not placated. “WEEKS?” one frantic follower replied. “I can’t possibly wait WEEKS!”

Source: University of California - Los Angeles

Latinos are the largest ethnic minority group in the United States, and it's expected that by 2050 they will comprise almost 30 percent of the U.S. population. Yet they are also the most underserved by health care and health insurance providers. Latinos' low rates of insurance coverage and poor access to health care strongly suggest a need for better outreach by health care providers and an improvement in insurance coverage. Although the implementation of the Affordable Care Act of 2010 seems to have helped (approximately 25 percent of those eligible for coverage under the ACA are Latino), public health experts expect that, even with the ACA, Latinos will continue to have problems accessing high-quality health care.

Alex Ortega, a professor of public health at the UCLA Fielding School of Public Health, and colleagues conducted an extensive review of published scientific research on Latino health care. Their analysis, published in the March issue of the Annual Review of Public Health, identifies four problem areas related to health care delivery to Latinos under ACA: The consequences of not covering undocumented residents. The growth of the Latino population in states that are not participating in the ACA's Medicaid expansion program. The heavier demand on public and private health care systems serving newly insured Latinos. The need to increase the number of Latino physicians and non-physician health care providers to address language and cultural barriers.

"As the Latino population continues to grow, it should be a national health policy priority to improve their access to care and determine the best way to deliver high-quality care to this population at the local, state and national levels," Ortega said. "Resolving these four key issues would be an important first step."

Insurance for the undocumented

Whether and how to provide insurance for undocumented residents is, at best, a complicated decision, said Ortega, who is also the director of the UCLA Center for Population Health and Health Disparities.

For one thing, the ACA explicitly excludes the estimated 12 million undocumented people in the U.S. from benefiting from either the state insurance exchanges established by the ACA or the ACA's expansion of Medicaid. That rule could create a number of problems for local health care and public health systems.

For example, federal law dictates that anyone can receive treatment at emergency rooms regardless of their citizenship status, so the ACA's exclusion of undocumented immigrants has discouraged them from using primary care providers and instead driven them to visit emergency departments. This is more costly for users and taxpayers, and it results in higher premiums for those who are insured.

In addition, previous research has shown that undocumented people often delay seeking care for medical problems.

"That likely results in more visits to emergency departments when they are sicker, more complications and more deaths, and more costly care relative to insured patients," Ortega said.

Insuring the undocumented would help to minimize these problems and would also have a significant economic benefit.

"Given the relatively young age and healthy profiles of undocumented individuals, insuring them through the ACA and expanding Medicaid could help offset the anticipated high costs of managing other patients, especially those who have insurance but also have chronic health problems," Ortega said.

The growing Latino population in non-ACA Medicaid expansion states

A number of states opted out of ACA Medicaid expansion after the 2012 Supreme Court ruling that made it voluntary for state governments. That trend has had a negative effect on Latinos in these states who would otherwise be eligible for Medicaid benefits, Ortega said.

As of March, 28 states including Washington, D.C., are expanding eligibility for Medicaid under the ACA, and six more are considering expansions. That leaves 16 states who are not participating, many of which have rapidly increasing Latino populations.

"It's estimated that if every state participated in the Medicaid expansion, nearly all uninsured Latinos would be covered except those barred by current law -- the undocumented and those who have been in the U.S. less than five years," Ortega said. "Without full expansion, existing health disparities among Latinos in these areas may worsen over time, and their health will deteriorate."

New demands on community clinics and health centers

Nationally, Latinos account for more than 35 percent of patients at community clinics and federally approved health centers. Many community clinics provide culturally sensitive care and play an important role in eliminating racial and ethnic health care disparities.

But Ortega said there is concern about their financial viability. As the ACA is implemented and more people become insured for the first time, local community clinics will be critical for delivering primary care to those who remain uninsured.

"These services may become increasingly politically tenuous as undocumented populations account for higher proportions of clinic users over time," he said. "So it remains unclear how these clinics will continue to provide care for them."

Need for diversity in health care workforce

Language barriers also can affect the quality of care for people with limited English proficiency, creating a need for more Latino health care workers -- Ortega said the proportion of physicians who are Latino has not significantly changed since the 1980s.

The gap could make Latinos more vulnerable and potentially more expensive to treat than other racial and ethnic groups with better English language skills.

The UCLA study also found recent analyses of states that were among the first to implement their own insurance marketplaces suggesting that reducing the number of people who were uninsured reduced mortality and improved health status among the previously uninsured.

"That, of course, is the goal -- to see improvements in the overall health for everyone," Ortega said.

Halle Tecco

Source: http://rockhealth.com 

Exactly a year ago, we decided to publish the gender data on founders at Rock Health. Despite women being the majority of our team and our board, only 30% of our portfolio companies had a female founder (today, we are at almost 34%). Because we’d like to help our portfolio companies access a diverse talent pool, we began the XX in Health initiative nearly four years ago.

The aim of this initiative is to bring women together to network and support one another. The 2,400 members of the group share resources and ideas on LinkedIn and meet regularly across the country. This week we’re hosting a webinar on the topic for both men and women, and next week we’ll host our sixth XX in Health Retreat in NYC.

Today, through this initiative, we are proud to share our third annual report on the state of women in healthcare. Our past reports on this topic have been some of our most popular content, and we encourage you to share this report with your colleagues.

Women are still underrepresented in leadership positions in healthcare.

Despite making up more than half the healthcare workforce, women represent only 21% of executives and 21% of board members at Fortune 500 healthcare companies. Of the 125 women who carry an executive title, only five serve in operating roles as COO or President. And there’s only one woman CEOof a Fortune 500 healthcare company.

Hospital diversity fares slightly better. At Thomson Reuters 100 Top Hospitals, women make up 27% of hospital boards, and 34% of leadership teams. There are 97 women that carry a C-level title at these hospitals and 10 women serve as hospital CEO.

We know from our funding data that women make up only 6% of digital health CEOs funded in the last four years. When we looked at the gender breakdown of the 148 VC firms investing in digital health, we understood why. Women make up only 10% of partners, those responsible for making final investment decisions. In fact, 75 of those firms have ZERO women partners (including Highland Capital, Third Rock, Sequoia, Shasta Ventures). Venture firms with women investment partners are 3X more likely to investin companies with women CEOs. It’s no wonder women CEOs aren’t getting funded.

The problem is real, and the problem matters.

We surveyed over 400 women in the industry to better understand the sentiment around gender discrimination. 96% of the women we surveyed believe gender discrimination still exists. And almost half of them cited gender as one of the biggest hurdles they’ve faced professionally.

Often these are micro-inequities that compound over one’s career. MIT Professor Mary Rowe describes these instances as “apparently small events which are often ephemeral and hard-to-prove, events which are covert, often unintentional, frequently unrecognized by the perpetrator.” But they create work environments which hold women back.

When senior women are scarce in an organization, a vicious cycle of  “second-generation” gender bias kicks in. Researchers describe this bias as barriers that “arise from cultural assumptions and organizational structures, practices, and patterns of interaction that [put] women at a disadvantage.” Fewer women leaders means fewer role models for would-be women leaders. On the flip side, when women who are early in their career see more women in senior leadership positions, it sends the message that they too belong in the C-suite.

The good news is that achieving diverse leadership teams is not just a moral imperative, it’s good for business too.

Having a diverse team creates a positive, virtuous cycle. Companies with women CEOs outperform the stock market, and companies with women on their boards outperform male-only boards by 26 percent. Researchers even estimate that transitioning from a single-gender office to an office evenly split between men and women be associated with a revenue gain of 41%.

Not only do companies with more women in leadership yield better economic returns, recent research also suggests it helps mitigate risk. One study shows that each additional female director reduces the number of a company’s attempted takeover bids by 7.6%. Another study indicates that companies with more women on their board had fewer instances of governance-related scandals such as bribery, corruption, fraud, and shareholder battles.

Let’s get together and support one another.

Empower your colleagues to promote gender equality in the workplace. This month we challenge you to reach out to that mentor, manager, peer, or mentee with whom you’ve been meaning to connect with. Ask her to grab coffee and send us a picture by April 30 so we can share it on the XX in Health website!