If you go to the hospital for medical treatment and scientists there decide to use your medical information to create a commercial product, are you owed anything as part of the bargain?
That's one of the questions that is emerging as researchers and product developers eagerly delve into digital data such as CT scans and electronic medical records, making artificial-intelligence products that are helping doctors to manage information and even to help them diagnose disease.
This issue cropped up in 2016, when Google DeepMind decided to test an app that measures kidney health by gathering 1.6 million records from patients at the Royal Free Hospital in London. The British authorities found this broke patient privacy laws in the United Kingdom and put a stop to it.
But the rules are different in the United States. The most notable cases have involved living tissue, but the legal arguments apply to medical data as well. One of the best examples dates back to 1976, when John Moore went to UCLA to be treated for hairy cell leukemia.
Prof. Leslie Wolf, director of the Center for Health, Law and Society at the Georgia State University College of Law, says Moore's doctors gave him good medical care, "but they also discovered there was something interesting about his cells and created a cell line from his cells without his knowledge," she says.
"And what complicated things even more is they asked Mr. Moore to travel down from his home in Seattle to L.A. multiple times, for seven years, to get additional cells without telling him they had this commercial interest in his cells."
Moore sued. In 1990, The California Supreme Court decided that he did not own his cells, but found his doctors had an obligation to inform him that his tissue was being used for commercial purposes and to give him a chance to object. Moore reached a settlement following his court battle, "but Mr. Moore certainly felt betrayed through the process," Wolf says.
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https://www.npr.org/sections/health-shots/2018/05/31/615501659/when-scientists-develop-products-from-personal-medical-data-who-gets-to-profit?
Thursday, May 31, 2018
The Largest Health Disparity We Don’t Talk About - The New York Times
I didn't think our relationship would last, but neither did I think it would end so soon.
My patient had struggled with bipolar disorder his entire life, and his illness dominated our years together. He had, in a fit of hopelessness, tried to take his life with a fistful of pills. He had, in an episode of mania, driven his car into a tree. But the reason I now held his death certificate — his sister and mother in tears by his bed — was more pedestrian: a ruptured plaque in his coronary artery. A heart attack.
Americans with depression, bipolar disorder or other serious mental illnesses die 15 to 30 years younger than those without mental illness — a disparity larger than for race, ethnicity, geography or socioeconomic status. It's a gap, unlike many others, that has been growing, but it receives considerably less academic study or public attention. The extraordinary life expectancy gains of the past half-century have left these patients behind, with the result that Americans with serious mental illness live shorter lives than those in many of the world's poorest countries.
National conversations about better mental health care tend to follow a mass shooting or the suicide of a celebrity. These discussions obscure a more rampant killer of millions of Americans with mental illness: chronic disease.
We may assume that people with mental health problems die of "unnatural causes" like suicide, overdoses and accidents, but they're much more likely to die of the same things as everyone else: cancer, heart disease, stroke, diabetes and respiratory problems. Those with serious mental illness are more likely to struggle with homelessness, poverty and social isolation. They have higher rates of obesity, physical inactivity and tobacco use. Nearly half don't receive treatment, and for those who do, there's often a long delay.
When these patients do make it into our clinics and hospitals, it's clear that we could do better. A troubled mind can distract doctors from an ailing heart or a budding cancer.
More ...
https://www.nytimes.com/2018/05/30/upshot/mental-illness-health-disparity-longevity.html
My patient had struggled with bipolar disorder his entire life, and his illness dominated our years together. He had, in a fit of hopelessness, tried to take his life with a fistful of pills. He had, in an episode of mania, driven his car into a tree. But the reason I now held his death certificate — his sister and mother in tears by his bed — was more pedestrian: a ruptured plaque in his coronary artery. A heart attack.
Americans with depression, bipolar disorder or other serious mental illnesses die 15 to 30 years younger than those without mental illness — a disparity larger than for race, ethnicity, geography or socioeconomic status. It's a gap, unlike many others, that has been growing, but it receives considerably less academic study or public attention. The extraordinary life expectancy gains of the past half-century have left these patients behind, with the result that Americans with serious mental illness live shorter lives than those in many of the world's poorest countries.
National conversations about better mental health care tend to follow a mass shooting or the suicide of a celebrity. These discussions obscure a more rampant killer of millions of Americans with mental illness: chronic disease.
We may assume that people with mental health problems die of "unnatural causes" like suicide, overdoses and accidents, but they're much more likely to die of the same things as everyone else: cancer, heart disease, stroke, diabetes and respiratory problems. Those with serious mental illness are more likely to struggle with homelessness, poverty and social isolation. They have higher rates of obesity, physical inactivity and tobacco use. Nearly half don't receive treatment, and for those who do, there's often a long delay.
When these patients do make it into our clinics and hospitals, it's clear that we could do better. A troubled mind can distract doctors from an ailing heart or a budding cancer.
More ...
https://www.nytimes.com/2018/05/30/upshot/mental-illness-health-disparity-longevity.html
‘Unintended pregnancy’: Nearly 170,000 Allergan birth control packs recalled - The Washington Post
Pharmaceutical company Allergan issued a nationwide recall Tuesday for nearly 170,000 sample packs of the birth control Taytulla after a packaging error caused pills to be placed in the wrong order, a mistake that it said could lead to unintended pregnancies.
The botched packs have placebo pills where active pills should be, Allergan said in a statement. The 28-pill pack should have 24 pink pills with hormones followed by the four maroon capsules that don't have hormones, the company said. However, in the recalled packs, the placebos are at the beginning of the treatment. Taking placebos allow women to still experience period-like bleeding.
"The reversing of the order may not be apparent to either new users or previous users of the product, increasing the likelihood of taking the capsules out of order," the company's statement said. "If patients have concerns regarding the possibility of an unintended pregnancy they should consult their physician."
More ...
https://www.washingtonpost.com/news/morning-mix/wp/2018/05/30/nearly-170000-allergan-birth-control-packs-recalled-after-error-leaves-pills-out-of-order/?
The botched packs have placebo pills where active pills should be, Allergan said in a statement. The 28-pill pack should have 24 pink pills with hormones followed by the four maroon capsules that don't have hormones, the company said. However, in the recalled packs, the placebos are at the beginning of the treatment. Taking placebos allow women to still experience period-like bleeding.
"The reversing of the order may not be apparent to either new users or previous users of the product, increasing the likelihood of taking the capsules out of order," the company's statement said. "If patients have concerns regarding the possibility of an unintended pregnancy they should consult their physician."
More ...
https://www.washingtonpost.com/news/morning-mix/wp/2018/05/30/nearly-170000-allergan-birth-control-packs-recalled-after-error-leaves-pills-out-of-order/?
BBC - Future - Pain bias: The health inequality rarely discussed
In 2009, my doctor told me that, like "a lot of women", I was paying too much attention to my body. Saying there wasn't an issue, he suggested I just relax and try to ignore the symptoms.
The decision seemed to run counter to what my records showed. A few weeks earlier, I had ended up in the emergency room with chest pains and a heart rate hitting 220 beats per minute. The ER crew told me it was a panic attack, gave me Xanax and told me to try to sleep.
I'd had panic attacks before. I knew this episode was not one. So I went to my doctor.
He put me on a heart monitor overnight. Bingo: I had another episode, this time recorded. It didn't matter. I still left his office thinking it was perhaps anxiety. And so, listening to the advice, I tried to ignore the pain.
Until it happened again. And again. First every month, then every week. Over the following nine years, I would complain about it and be told again that I was having panic attacks or anxiety, that women don't feel heart pain the way I was feeling it, and that maybe I was just confused.
More ...
http://www.bbc.com/future/story/20180518-the-inequality-in-how-women-are-treated-for-pain
The decision seemed to run counter to what my records showed. A few weeks earlier, I had ended up in the emergency room with chest pains and a heart rate hitting 220 beats per minute. The ER crew told me it was a panic attack, gave me Xanax and told me to try to sleep.
I'd had panic attacks before. I knew this episode was not one. So I went to my doctor.
He put me on a heart monitor overnight. Bingo: I had another episode, this time recorded. It didn't matter. I still left his office thinking it was perhaps anxiety. And so, listening to the advice, I tried to ignore the pain.
Until it happened again. And again. First every month, then every week. Over the following nine years, I would complain about it and be told again that I was having panic attacks or anxiety, that women don't feel heart pain the way I was feeling it, and that maybe I was just confused.
More ...
http://www.bbc.com/future/story/20180518-the-inequality-in-how-women-are-treated-for-pain
BBC - Future - 'Everybody was telling me there was nothing wrong'
Compared to many other diseases, diagnosing a brain tumour is fairly straightforward. Promptly detecting it comes down to being concerned enough about the early symptoms – which range from fatigue to seizures to personality change – to get an image of the brain. Either the tumour is there, or it isn't.
But in 2016, the Brain Tumour Charity released a report on the treatment of brain tumour patients in the United Kingdom. It found that almost one in three of them had visited a doctor more than five times before receiving their diagnosis. Nearly a quarter weren't diagnosed for more than a year.
Women, as well as low-income patients, experienced longer delays. They were more likely than men to see 10 or more months pass between their first visit to a doctor and diagnosis –and to have made more than five visits to a doctor prior to diagnosis.
One 39-year-old woman quoted in the report recalled: "One of the GPs I saw actually made fun of me, saying 'what did I think my headaches were, a brain tumour?' I had to request a referral to neurology. I went back repeated times to be given antidepressants, sleep charts, analgesia, etc. No one took me seriously."
More ...
http://www.bbc.com/future/story/20180523-how-gender-bias-affects-your-healthcare?
But in 2016, the Brain Tumour Charity released a report on the treatment of brain tumour patients in the United Kingdom. It found that almost one in three of them had visited a doctor more than five times before receiving their diagnosis. Nearly a quarter weren't diagnosed for more than a year.
Women, as well as low-income patients, experienced longer delays. They were more likely than men to see 10 or more months pass between their first visit to a doctor and diagnosis –and to have made more than five visits to a doctor prior to diagnosis.
One 39-year-old woman quoted in the report recalled: "One of the GPs I saw actually made fun of me, saying 'what did I think my headaches were, a brain tumour?' I had to request a referral to neurology. I went back repeated times to be given antidepressants, sleep charts, analgesia, etc. No one took me seriously."
More ...
http://www.bbc.com/future/story/20180523-how-gender-bias-affects-your-healthcare?
Monday, May 28, 2018
When is dentistry not medicine? When insurance is involved - CNN
I'm 61 years old, a San Francisco homeowner with an academic position at the University of California-Berkeley, which provides me with comprehensive health insurance. Yet, to afford the more than $50,000 in out-of-pocket expenses required for the restorative dental work I've needed in the past 20 years, I've had to rely on handouts -- from my mom.
This was how I learned all about the Great Divide between medicine and dentistry -- especially in how treatment is paid for, or mostly not paid for, by insurers. Many Americans with serious dental illness find out the same way: sticker shock.
For millions of Americans -- blessed in some measure with good genes and good luck -- dental insurance works pretty well, and they don't think much about it. But people like me learn the hard way that dental insurance isn't insurance at all -- not in the sense of providing significant protection against unexpected or unaffordable costs. My dental coverage from UC-Berkeley, where I have been on the public health and journalism faculties, tops out at $1,500 a year -- and that's considered a decent plan.
More ...
https://edition.cnn.com/2018/05/28/health/dental-insurance-partner/index.html?
This was how I learned all about the Great Divide between medicine and dentistry -- especially in how treatment is paid for, or mostly not paid for, by insurers. Many Americans with serious dental illness find out the same way: sticker shock.
For millions of Americans -- blessed in some measure with good genes and good luck -- dental insurance works pretty well, and they don't think much about it. But people like me learn the hard way that dental insurance isn't insurance at all -- not in the sense of providing significant protection against unexpected or unaffordable costs. My dental coverage from UC-Berkeley, where I have been on the public health and journalism faculties, tops out at $1,500 a year -- and that's considered a decent plan.
More ...
https://edition.cnn.com/2018/05/28/health/dental-insurance-partner/index.html?
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