Pinboard (jm)
https://pinboard.in/u:jm/public/
recent bookmarks from jmUnitedHealth uses AI model with 90% error rate to deny care, lawsuit alleges2023-11-17T09:50:41+00:00
https://arstechnica.com/health/2023/11/ai-with-90-error-rate-forces-elderly-out-of-rehab-nursing-homes-suit-claims/
jmThe health care industry in the US has a ... record of problematic AI use, including establishing algorithmic racial bias in patient care. But, what sets this situation apart is that the dubious estimates nH Predict spits out seem to be a feature, not a bug, for UnitedHealth.
Since UnitedHealth acquired NaviHealth in 2020, former employees told Stat that the company's focus shifted from patient advocacy to performance metrics and keeping post-acute care as short and lean as possible. Various statements by UnitedHealth executives echoed this shift, Stat noted. In particular, the UnitedHealth executive overseeing NaviHealth, Patrick Conway, was quoted in a company podcast saying: "If [people] go to a nursing home, how do we get them out as soon as possible?"
The lawsuit argues that UnitedHealth should have been well aware of the "blatant inaccuracy" of nH Predict's estimates based on its error rate. Though few patients appeal coverage denials generally, when UnitedHealth members appeal denials based on nH Predict estimates—through internal appeals processes or through the federal Administrative Law Judge proceedings—over 90 percent of the denials are reversed, the lawsuit claims. This makes it obvious that the algorithm is wrongly denying coverage, it argues.
But, instead of changing course, over the last two years, NaviHealth employees have been told to hew closer and closer to the algorithm's predictions. In 2022, case managers were told to keep patients' stays in nursing homes to within 3 percent of the days projected by the algorithm, according to documents obtained by Stat. In 2023, the target was narrowed to 1 percent.
And these aren't just recommendations for NaviHealth case managers—they're requirements. Case managers who fall outside the length-of-stay target face discipline or firing. Lynch, for instance, told Stat she was fired for not making the length-of-stay target, as well as falling behind on filing documentation for her daily caseloads.
]]>ai algorithms health health-insurance healthcare us unitedhealth navihealth computer-says-no dystopia grim-meathook-futurehttps://pinboard.in/https://pinboard.in/u:jm/b:d3f1e6f1e02b/Evidence Undermines 'Rapid Onset Gender Dysphoria' Claims2023-08-24T20:50:05+00:00
https://www.scientificamerican.com/article/evidence-undermines-rapid-onset-gender-dysphoria-claims/#
jm“This is just a fear-based concept that is not supported by studies,” says Marci Bowers, president of the World Professional Association for Transgender Health. The term ROGD is being used to “scare people or to scare legislators into voting for some of these restrictive policies that take away options for young people. It’s cruel, cruel legislation.”
]]>rogd gender trans politics healthcare transgenderhttps://pinboard.in/https://pinboard.in/u:jm/b:c31317856702/Long COVID Is Being Erased -- Again - The Atlantic2023-04-20T09:15:56+00:00
https://archive.is/20230420034907/https://www.theatlantic.com/health/archive/2023/04/long-covid-symptoms-invisible-disability-chronic-illness/673773/#selection-643.0-647.321
jmMost Americans simply aren’t thinking about COVID with the same acuity they once did; the White House long ago zeroed in on hospitalizations and deaths as the measures to worry most about. And what was once outright denial of long COVID’s existence has morphed into something subtler: a creeping conviction, seeded by academics and journalists and now common on social media, that long COVID is less common and severe than it has been portrayed—a tragedy for a small group of very sick people, but not a cause for societal concern. This line of thinking points to the absence of disability claims, the inconsistency of biochemical signatures, and the relatively small proportion of severe cases as evidence that long COVID has been overblown. “There’s a shift from ‘Is it real?’ to ‘It is real, but …,’” Lekshmi Santhosh, the medical director of a long-COVID clinic at UC San Francisco, told me.
Yet long COVID is a substantial and ongoing crisis—one that affects millions of people. However inconvenient that fact might be to the current “mission accomplished” rhetoric, the accumulated evidence, alongside the experience of long haulers, makes it clear that the coronavirus is still exacting a heavy societal toll.
]]>long-covid ed-yong covid-19 health medicine society healthcarehttps://pinboard.in/https://pinboard.in/u:jm/b:9d759bf853c5/A healthcare algorithm started cutting care, and no one knew why2023-01-09T14:44:28+00:00
https://www.theverge.com/2018/3/21/17144260/healthcare-medicaid-algorithm-arkansas-cerebral-palsy
jm
Legal Aid filed a federal lawsuit in 2016, arguing that the state had instituted a new [healthcare] policy without properly notifying the people affected about the change. There was also no way to effectively challenge the system, as they couldn’t understand what information factored into the changes, De Liban argued. No one seemed able to answer basic questions about the process. “The nurses said, ‘It’s not me; it’s the computer,’” De Liban says.
When they dug into the system, they discovered more about how it works. Out of the lengthy list of items that assessors asked about, only about 60 factored into the home care algorithm. The algorithm scores the answers to those questions, and then sorts people into categories through a flowchart-like system. It turned out that a small number of variables could matter enormously: for some people, a difference between a score of a three instead of a four on any of a handful of items meant a cut of dozens of care hours a month. (Fries didn’t say this was wrong, but said, when dealing with these systems, “there are always people at the margin who are going to be problematic.”) [...]
From the state’s perspective, the most embarrassing moment in the dispute happened during questioning in court. Fries was called in to answer questions about the algorithm and patiently explained to De Liban how the system works. After some back-and-forth, De Liban offered a suggestion: “Would you be able to take somebody’s assessment report and then sort them into a category?” [...]
Fries said he could, although it would take a little time. He looked over the numbers for Ethel Jacobs. After a break, a lawyer for the state came back and sheepishly admitted to the court: there was a mistake. Somehow, the wrong calculation was being used. They said they would restore Jacobs’ hours.
“Of course we’re gratified that DHS has reported the error and certainly happy that it’s been found, but that almost proves the point of the case,” De Liban said in court. “There’s this immensely complex system around which no standards have been published, so that no one in their agency caught it until we initiated federal litigation and spent hundreds of hours and thousands of dollars to get here today. That’s the problem.”
]]>algorithms government health healthcare automation grim-meathook-future futurehttps://pinboard.in/https://pinboard.in/u:jm/b:738238124fc3/VaccinateCA2022-12-12T12:24:28+00:00
https://www.worksinprogress.co/issue/the-story-of-vaccinateca/
jmcalifornia community health healthcare volunteers covid-19 vaccines 2021 pandemics vaccinationhttps://pinboard.in/https://pinboard.in/u:jm/b:7d0413b24139/America Is Choosing to Stay Vulnerable to Pandemics - The Atlantic2022-10-05T14:30:13+00:00
https://www.theatlantic.com/health/archive/2022/09/covid-pandemic-exposes-americas-failing-systems-future-epidemics/671608/
jm
"The allure of biomedical panaceas is still strong. For more than a year, the Biden administration and its advisers have reassured Americans that, with vaccines and antivirals, “we have the tools” to control the pandemic. These tools are indeed effective, but their efficacy is limited if people can’t access them or don’t want to, and if the government doesn’t create policies that shift that dynamic."
"Technological solutions also tend to rise into society’s penthouses, while epidemics seep into its cracks. Cures, vaccines, and diagnostics first go to people with power, wealth, and education, who then move on, leaving the communities most affected by diseases to continue shouldering their burden."
"America has little chance of effectively countering the inevitable pandemics of the future; it cannot even focus on the one that’s ongoing."]]>coronavirus covid-19 pandemics future america ed-yong healthcarehttps://pinboard.in/https://pinboard.in/u:jm/b:5a1b4de72188/Researchers Pinpoint Reason Infants Die From SIDS2022-05-13T08:57:24+00:00
https://www.biospace.com/article/researchers-answer-how-and-why-infants-die-from-sids/?hss_channel=fbp-10530620221
jmSIDS refers to the unexplained deaths of infants under a year old, and it usually occurs while the child is sleeping. According to Mayo Clinic, many in the medical community suspected this phenomenon could be caused by a defect in the part of the brain that controls arousal from sleep and breathing. The theory was that if the infant stopped breathing during sleep, the defect would keep the child from startling or waking up.
The Sydney researchers were able to confirm this theory by analyzing dried blood samples taken from newborns who died from SIDS and other unknown causes. Each SIDS sample was then compared with blood taken from healthy babies. They found the activity of the enzyme butyrylcholinesterase (BChE) was significantly lower in babies who died of SIDS compared to living infants and other non-SIDS infant deaths. BChE plays a major role in the brain’s arousal pathway, explaining why SIDS typically occurs during sleep.
Previously, parents were told SIDS could be prevented if they took proper precautions: laying babies on their backs, not letting them overheat and keeping all toys and blankets out of the crib were a few of the most important preventative steps. While safe sleep practices are still important for protecting infants, many children whose parents took every precaution still died from SIDS. These parents were left with immense guilt, wondering if they could have prevented their baby’s death.
Dr. Carmel Harrington, the lead researcher for the study, was one of these parents. Her son unexpectedly and suddenly died as an infant 29 years ago. In an interview with the Australian Broadcasting Corporation (ABC), Harrington explained what she was told about the cause of her child’s death.
"Nobody could tell me. They just said it's a tragedy. But it was a tragedy that didn't sit well with my scientific brain.”
Since then, she’s worked to find the cause of SIDS, both for herself and for the medical community as a whole. She went on to explain why this discovery is so important for parents whose babies suffered from SIDS.
"These families can now live with the knowledge that this was not their fault," she said.
(via Damien)
]]>healthcare medicine parenting science via:damienmulley sids diseases neurochemistryhttps://pinboard.in/https://pinboard.in/u:jm/b:fc646fefc553/“Living with COVID” has been a lie2022-05-02T22:01:39+00:00
https://twitter.com/LucaFerrettiEvo/status/1520858546845675520
jm“Living with COVID” has been a lie.
Not because it isn’t possible, or because it isn’t the right goal.
But in practice it has clearly morphed into "let's stop talking about COVID, and the problem will disappear by itself". A dangerous and irresponsible bet.
Most of the political & health authorities have implicitly chosen to rely mainly on vaccination to control COVID. A reasonable choice...
if only the vaccination campaign would have aimed at protecting the entire population with sterilising vaccines adapted to the new variants.
Instead, despite hundreds of vaccines in the pipeline, there are no next-generation or sterilising vaccines on the horizon...
little large-scale clinical trials (apart from Israel)...
and few updated vaccines against variants (Moderna's Omicron-Delta booster and little else).
Of course, protection for children has been repeatedly delayed (English kids between 5-11 were vaccinated only last month) and kids under 5 are still unprotected worldwide, with the laudable exception of Cuba. Everybody’s waiting for the US FDA, whose intentions are unclear.
It is truly depressing to see so little and slow concrete progress on what is meant to be "the ultimate weapon" against SARSCoV2. It seems to suggest that we don't really rely so much on it, and that we're satisfied with postponing the problems until the next not-so-mild variant.
Simple precautionary public hygiene measures - face masks and ventilation - are mostly ignored.
Testing and surveillance, downsized or limited.
And the growing stress on the healthcare system is being swept under the carpet, even as we risk paying the price for it for years.
This is not the product of any large conspiracy. It is simply the result of a combination of neglect, inertia, bureaucracy, selfishness, careerism, lack of long-term perspective and so on, among some (though not all!) politicians, doctors, academics, bureaucrats and others...
]]>covid-19 sars-cov-2 public-health medicine healthcare pandemics vaccinationhttps://pinboard.in/https://pinboard.in/u:jm/b:7892789747d9/Examples of biased AI/ML usage in healthcare and life sciences2020-06-24T15:45:24+00:00
https://news.ycombinator.com/item?id=23629014
jmbias bugs ai ml fail healthcare medicine life-sciences machine-learning racismhttps://pinboard.in/https://pinboard.in/u:jm/b:cbbc5926fc00/'Production of 3D printed components for ventilation systems: practical hints'2020-03-30T22:20:53+00:00
https://www.sages.org/wp-content/uploads/2020/03/3D-printing-for-COVID-19.pdf
jm3d-printing emergencies italy covid-19 medicine healthcare 3d4med ventilators cpaphttps://pinboard.in/https://pinboard.in/u:jm/b:d933915331b3/"The Italian College of Anesthesia, Analgesia, Resuscitation and Intensive Care just published the most extraordinary medical document I've ever seen"2020-03-11T14:57:20+00:00
https://threader.app/thread/1237731864233807872
jmA week ago, Italy had so few cases of corona that it could give each stricken patient high-quality care. Today, some hospitals are so overwhelmed that they simply cannot treat every patient. They are starting to do wartime triage. Here’s the guidance for that.
]]>italy healthcare safety medicine covid-19 emergencies triage hospitalshttps://pinboard.in/https://pinboard.in/u:jm/b:c00a230574ba/Coronavirus: Why You Must Act Now - Tomas Pueyo - Medium2020-03-11T10:30:15+00:00
https://medium.com/@tomaspueyo/coronavirus-act-today-or-people-will-die-f4d3d9cd99ca
jmcoronavirus covid19 healthcare epidemiology diseases statisticshttps://pinboard.in/https://pinboard.in/u:jm/b:afc303b28ce7/low-cost mechanical ventilator prototype2020-03-10T22:36:52+00:00
http://news.mit.edu/2010/itw-ventilator-0715
jma team of students from MIT has devised a better way to keep patients breathing in places that lack standard mechanical ventilators, or during times of emergency such as pandemics or natural disasters, when normal hospital resources may be overextended. They have designed a system that uses the same widely available manual pump — the same type used for the farmer in India. The new system encases the pump in a plastic box with a battery, motor and controls to take the place of the manual compression process.
This article from 2010 notes 'a U.S. government study in 2005 found that in a worst-case pandemic scenario, this country alone might need more than 700,000 mechanical ventilators, while only 100,000 are now in use.'
]]>ventilators covid-19 breathing healthcare hardware mit ambu-baghttps://pinboard.in/https://pinboard.in/u:jm/b:2bce05d13a69/Testimony of a surgeon working in Bergamo, in the heart of Italy's coronavirus outbreak : medicine2020-03-09T11:48:13+00:00
https://www.reddit.com/r/medicine/comments/ff8hns/testimony_of_a_surgeon_working_in_bergamo_in_the/?st=K7K9QQM7&sh=4ed48872
jmAfter thinking for a long time if and what to write about what's happening here, I felt that silence was not responsible. I will therefore try to convey to lay-people, those who are more distant from our reality, what we are experiencing in Bergamo during these Covid-19 pandemic days. I understand the need not to panic, but when the message of the danger of what is happening is not out, and I still see people ignoring the recommendations and people who gather together complaining that they cannot go to the gym or play soccer tournaments, I shiver. I also understand the economic damage and I am also worried about that. After this epidemic, it will be hard to start over.
]]>viral reddit bergamo healthcare covid-19 epidemics medicinehttps://pinboard.in/https://pinboard.in/u:jm/b:20829475598e/The history of leaded gasoline is nuts2020-03-03T14:39:45+00:00
https://twitter.com/bradplumer/status/1233488852997885956
jmgasoline petrol lead health poisoning healthcare yandell-hendersonhttps://pinboard.in/https://pinboard.in/u:jm/b:63447a31d5fb/Coronavirus in China: The most important lessons from China’s Covid-19 response - Vox2020-03-02T22:23:39+00:00
https://www.vox.com/2020/3/2/21161067/coronavirus-covid19-china
jmHere, again, is where I’ve seen things starting to break down. What I’ve been told is if you think you’ve been exposed and have a fever, call your [general practitioner]. We’ve got to be better than that. If we are going to use our GPs — do they have an emergency line where you can get through? Do they know what to do?
In China, they have set up a giant network of fever hospitals. In some areas, a team can go to you and swab you and have an answer for you in four to seven hours. But you’ve got to be set up — speed is everything.
]]>covid19 coronavirus china hospitals healthcare medicine pandemicshttps://pinboard.in/https://pinboard.in/u:jm/b:4d21f9058d65/Health-Records Company Pushed Opioids to Doctors in Secret Deal - Bloomberg2020-01-30T10:41:00+00:00
https://www.bloomberg.com/news/articles/2020-01-29/health-records-company-pushed-opioids-to-doctors-in-secret-deal
jmTo doctors opening patients’ electronic records across the U.S., the alert would have looked innocuous enough.
A pop-up would appear, asking about a patient’s level of pain. Then, a drop-down menu would list treatments ranging from a referral to a pain specialist to a prescription for an opioid painkiller.
Click a button, and the program would create a treatment plan. From 2016 to spring 2019, the alert went off about 230 million times.
The tool existed thanks to a secret deal. Its maker, a software company called Practice Fusion, was paid by a major opioid manufacturer to design it in an effort to boost prescriptions for addictive pain pills -- even though overdose deaths had almost tripled during the prior 15 years, creating a public-health disaster. The software was used by tens of thousands of doctors’ offices.
]]>healthcare capitalism opioids health-records pain painkillers addiction practice-fusionhttps://pinboard.in/https://pinboard.in/u:jm/b:af2dcb55b481/Ex-US healthcare industry insider spills the beans on false "choice"2019-12-17T11:22:52+00:00
https://twitter.com/wendellpotter/status/1206623266783129610
jmThe truth, of course, is you have little "choice" in healthcare now. Most can’t keep their plan as long as they want, or visit any doctor or hospital. Some reforms, like Medicare For All, *would* let you. In other words, M4A actually offers more choice than the status quo. So if a politician tells you they oppose reforming the current healthcare system because they want to preserve "choice," either they don't know what they're talking about - or they're willfully ignoring the truth. I assure you, the insurance industry is delighted either way.
(via Nelson.)]]>via:nelson health healthcare lies us-politics usa medicine choicehttps://pinboard.in/https://pinboard.in/u:jm/b:bd91b46ef9c2/Dexcom T1 diabetes glucose monitoring devices suffer major outage2019-12-02T12:24:44+00:00
https://twitter.com/RebeccaSlatkin/status/1200980487445106690
jmhealthcare incident-response outages fail dexcom diabetes hardware iot devices internet-of-shit grim-meathook-futurehttps://pinboard.in/https://pinboard.in/u:jm/b:754e8ab4b899/Google 'betrays patient trust' with DeepMind Health move | Technology | The Guardian2018-11-15T15:06:00+00:00
https://www.theguardian.com/technology/2018/nov/14/google-betrays-patient-trust-deepmind-healthcare-move
jm
Now that Streams is a Google product itself, that promise appears to have been broken, says privacy researcher Julia Powles: “Making this about semantics is a sleight of hand. DeepMind said it would never connect Streams with Google. The whole Streams app is now a Google product. That is an atrocious breach of trust, for an already beleaguered product.”
A DeepMind spokesperson emphasised that the core of the promise remains intact: “All patient data remains under our partners’ strict control, and all decisions about its use lie with them. This data remains subject to strict audit and access controls and its processing remains subject to both our contracts and data protection legislation. The move to Google does not affect this.”
]]>google deepmind health nhs data-protection privacy healthcarehttps://pinboard.in/https://pinboard.in/u:jm/b:889be36c24e4/What if the Placebo Effect Isn’t a Trick? - The New York Times2018-11-09T13:45:59+00:00
https://www.nytimes.com/2018/11/07/magazine/placebo-effect-medicine.html
jmIt is not possible to assay levels of COMT directly in a living brain, but there is a snippet of the genome called rs4680 that governs the production of the enzyme, and that varies from one person to another: One variant predicts low levels of COMT, while another predicts high levels. When Hall analyzed the I.B.S. patients’ DNA, she found a distinct trend. Those with the high-COMT variant had the weakest placebo responses, and those with the opposite variant had the strongest. These effects were compounded by the amount of interaction each patient got: For instance, low-COMT, high-interaction patients fared best of all, but the low-COMT subjects who were placed in the no-treatment group did worse than the other genotypes in that group. They were, in other words, more sensitive to the impact of the relationship with the healer.
The discovery of this genetic correlation to placebo response set Hall off on a continuing effort to identify the biochemical ensemble she calls the placebome — the term reflecting her belief that it will one day take its place among the other important “-omes” of medical science, from the genome to the microbiome. The rs4680 gene snippet is one of a group that governs the production of COMT, and COMT is one of a number of enzymes that determine levels of catecholamines, a group of brain chemicals that includes dopamine and epinephrine. (Low COMT tends to mean higher levels of dopamine, and vice versa.) Hall points out that the catecholamines are associated with stress, as well as with reward and good feeling, which bolsters the possibility that the placebome plays an important role in illness and health, especially in the chronic, stress-related conditions that are most susceptible to placebo effects.
]]>placebo comt health healthcare medicine enzymes brainhttps://pinboard.in/https://pinboard.in/u:jm/b:f9bf76966276/Post-apocalyptic life in American health care2018-01-09T11:38:07+00:00
https://meaningness.com/metablog/post-apocalyptic-health-care
jmbureaucracy healthcare health systems us-politics insurance medicine dysfunctional fail fiasco via:craighttps://pinboard.in/https://pinboard.in/u:jm/b:ed55c26b957b/Why People With Brain Implants Are Afraid to Go Through Automatic Doors2017-07-06T09:56:34+00:00
http://gizmodo.com/why-people-with-brain-implants-are-afraid-to-go-through-1796452196
jmIn 2009, Gary Olhoeft walked into a Best Buy to buy some DVDs. He walked out with his whole body twitching and convulsing. Olhoeft has a brain implant, tiny bits of microelectronic circuitry that deliver electrical impulses to his motor cortex in order to control the debilitating tremors he suffers as a symptom of Parkinson’s disease. It had been working fine. So, what happened when he passed through those double wide doors into consumer electronics paradise? He thinks the theft-prevention system interfered with his implant and turned it off.
Olhoeft’s experience isn’t unique. According to the Food and Drug Administration’s MAUDE database of medical device reports, over the past five years there have been at least 374 cases where electromagnetic interference was reportedly a factor in an injury involving medical devices including neural implants, pacemakers and insulin pumps. In those reports, people detailed experiencing problems with their devices when going through airport security, using massagers or simply being near electrical sources like microwaves, cordless drills or “church sound boards.”
]]>internet-of-things iot best-buy implants parkinsons-disease emi healthcare devices interferencehttps://pinboard.in/https://pinboard.in/u:jm/b:f08bbdd7e8c9/The Guardian view on patient data: we need a better approach | Editorial | Opinion | The Guardian2017-07-06T09:54:02+00:00
https://www.theguardian.com/commentisfree/2017/jul/05/the-guardian-view-on-patient-data-we-need-a-better-approach
jm
The use of privacy law to curb the tech giants in this instance, or of competition law in the case of the EU’s dispute with Google, both feel slightly maladapted. They do not address the real worry. It is not enough to say that the algorithms DeepMind develops will benefit patients and save lives. What matters is that they will belong to a private monopoly which developed them using public resources. If software promises to save lives on the scale that drugs now can, big data may be expected to behave as big pharma has done. We are still at the beginning of this revolution and small choices now may turn out to have gigantic consequences later. A long struggle will be needed to avoid a future of digital feudalism. Dame Elizabeth’s report is a welcome start.
Hear hear.
]]>privacy law uk nhs data google deepmind healthcare tech open-sourcehttps://pinboard.in/https://pinboard.in/u:jm/b:ac7e968296a3/Drug Company Chairman to America: Go Fuck Yourself2017-06-06T11:07:46+00:00
http://gizmodo.com/drug-company-chairman-to-america-go-fuck-yourself-1795816263
jm'Mr. Coury [chairman of Mylan, makers of the EpiPen] replied that he was untroubled [by critics of 10x price-gouging price hikes]. He raised both his middle fingers and explained, using colorful language, that anyone criticizing Mylan, including its employees, ought to go copulate with themselves. Critics in Congress and on Wall Street, he said, should do the same. And regulators at the Food and Drug Administration? They, too, deserved a round of anatomically challenging self-fulfillment.'
]]>mylan gfy fda us-politics healthcare medicine epipen nytimeshttps://pinboard.in/https://pinboard.in/u:jm/b:a6c7076a178c/Australian Doctor on Twitter: "Outcry as MyHealthRecord default privacy setting left open to universal access"2017-04-12T09:12:18+00:00
https://twitter.com/australiandr/status/851558786795880448
jmprivacy heaith australia myhealthrecord data-protection data-privacy healthcare medicinehttps://pinboard.in/https://pinboard.in/u:jm/b:75c35760ec78/Public preferences for electronic health data storage, access, and sharing – evidence from a pan-European survey | Journal of the American Medical Informatics Association2016-04-27T10:48:42+00:00
https://jamia.oxfordjournals.org/content/early/2016/04/22/jamia.ocw012
jmResults: We obtained 20 882 survey responses (94 606 preferences) from 27 EU member countries. Respondents recognized the benefits of storing electronic health information, with 75.5%, 63.9%, and 58.9% agreeing that storage was important for improving treatment quality, preventing epidemics, and reducing delays, respectively. Concerns about different levels of access by third parties were expressed by 48.9% to 60.6% of respondents. On average, compared to devices or systems that only store basic health status information, respondents preferred devices that also store identification data (coefficient/relative preference 95% CI = 0.04 [0.00-0.08], P = 0.034) and information on lifelong health conditions (coefficient = 0.13 [0.08 to 0.18], P < 0.001), but there was no evidence of this for devices with information on sensitive health conditions such as mental and sexual health and addictions (coefficient = −0.03 [−0.09 to 0.02], P = 0.24). Respondents were averse to their immediate family (coefficient = −0.05 [−0.05 to −0.01], P = 0.011) and home care nurses (coefficient = −0.06 [−0.11 to −0.02], P = 0.004) viewing this data, and strongly averse to health insurance companies (coefficient = −0.43 [−0.52 to 0.34], P < 0.001), private sector pharmaceutical companies (coefficient = −0.82 [−0.99 to −0.64], P < 0.001), and academic researchers (coefficient = −0.53 [−0.66 to −0.40], P < 0.001) viewing the data.
Conclusions: Storing more detailed electronic health data was generally preferred, but respondents were averse to wider access to and sharing of this information. When developing frameworks for the use of electronic health data, policy makers should consider approaches that both highlight the benefits to the individual and minimize the perception of privacy risks.
Via Antoin.]]>privacy data medicine health healthcare papers via:antoinhttps://pinboard.in/https://pinboard.in/u:jm/b:88cff7bebb3f/Care.data and access to UK health records: patient privacy and public trust2015-08-11T14:53:46+00:00
http://techscience.org/a/2015081103/
jmcare.data privacy healthcare uk nhs trust anonymity anonymization gps medicinehttps://pinboard.in/https://pinboard.in/u:jm/b:b851cecd8d17/Can we have medical privacy, cloud computing and genomics all at the same time?2015-02-03T00:32:14+00:00
https://www.lightbluetouchpaper.org/2015/02/03/nuffield-bioethics-report/
jmToday sees the publication of a report I [Ross Anderson] helped to write for the Nuffield Bioethics Council on what happens to medical ethics in a world of cloud-based medical records and pervasive genomics.
As the information we gave to our doctors in private to help them treat us is now collected and treated as an industrial raw material, there has been scandal after scandal. From failures of anonymisation through unethical sales to the care.data catastrophe, things just seem to get worse. Where is it all going, and what must a medical data user do to behave ethically?
We put forward four principles. First, respect persons; do not treat their confidential data like were coal or bauxite. Second, respect established human-rights and data-protection law, rather than trying to find ways round it. Third, consult people who’ll be affected or who have morally relevant interests. And fourth, tell them what you’ve done – including errors and security breaches.
]]>ethics medicine health data care.data privacy healthcare ross-anderson genomics data-protection human-rightshttps://pinboard.in/https://pinboard.in/u:jm/b:40fb68894a1e/Madhumita Venkataramanan: My identity for sale (Wired UK)2014-11-04T17:31:02+00:00
http://www.wired.co.uk/magazine/archive/2014/11/features/my-identity-for-sale/viewall
jmAs the data we generate about ourselves continues to grow exponentially, brokers and aggregators are moving on from real-time profiling -- they're cross-linking data sets to predict our future behaviour. Decisions about what we see and buy and sign up for aren't made by us any more; they were made long before. The aggregate of what's been collected about us previously -- which is near impossible for us to see in its entirety -- defines us to companies we've never met. What I am giving up without consent, then, is not just my anonymity, but also my right to self-determination and free choice. All I get to keep is my name.
]]>wired privacy data-aggregation identity-theft future grim biometrics opt-out healthcare data data-protection trackinghttps://pinboard.in/https://pinboard.in/u:jm/b:a50748e07bb4/Big doubts on big data: Why I won't be sharing my medical data with anyone - yet2014-02-27T17:46:08+00:00
http://www.zdnet.com/uk/big-doubts-on-big-data-why-i-wont-be-sharing-my-medical-data-with-anyone-yet-7000026497/
jmThese problems can be circumvented, but they must be dealt with, publically and soberly, if the NHS really does want to win public confidence. The NHS should approach selling the scheme to the public as if was opt-in, not opt-out, then work to convince us to join it. Tell us how sharing our data can help, but tell us what risk too. Let us decide if that balance is worth it. If it's found wanting, the NHS must go back to the drawing board and retool the scheme until it is. It's just too important to get wrong.
]]>nhs uk privacy data-protection data-privacy via:mynosql big-data healthcare insurancehttps://pinboard.in/https://pinboard.in/u:jm/b:d274ea13c362/UK NHS will soon require GPs pass confidential medical data to third parties2014-01-09T16:57:31+00:00
http://care-data.info/
jmopt-out privacy medical data healthcare nhs uk data-privacy data-protectionhttps://pinboard.in/https://pinboard.in/u:jm/b:37b6d58f4cb4/21 graphs that show America’s health-care prices are ludicrous2013-03-27T12:01:47+00:00
http://www.washingtonpost.com/blogs/wonkblog/wp/2013/03/26/21-graphs-that-show-americas-health-care-prices-are-ludicrous/
jmhealthcare costs economics us-politics world comparison graphs charts data via:hn americahttps://pinboard.in/https://pinboard.in/u:jm/b:357f5606c58c/Stephen Hawking Has Not Yet Been Murdered by the NHS2009-08-11T10:05:41+00:00
http://www.spectator.co.uk/alexmassie/5255761/stephen-hawking-has-not-yet-been-murdered-by-the-nhs.thtml
jmpolitics humour healthcare via:bwalsh stephen-hawking us-politics derp morons funny nhs ukhttps://pinboard.in/u:jm/b:a8762b17a009/