jm + healthcare   12

Why People With Brain Implants Are Afraid to Go Through Automatic Doors
In 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  interference 
11 weeks ago by jm
The Guardian view on patient data: we need a better approach | Editorial | Opinion | The Guardian

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-source 
11 weeks ago by jm
Drug Company Chairman to America: Go Fuck Yourself
'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  nytimes 
june 2017 by jm
Australian Doctor on Twitter: "Outcry as MyHealthRecord default privacy setting left open to universal access"
Funnily enough, this is exactly what Ross Anderson warned about 10 years ago re patient record digitisation in the UK.

'Occupational therapists working for an employer, doctors working for insurance companies, a dietitian, an optometrist or a dentist or their staff can view the [patient] record and see if individuals have a sexually transmitted disease, a mental illness, have had an abortion or are using Viagra.'
privacy  heaith  australia  myhealthrecord  data-protection  data-privacy  healthcare  medicine 
april 2017 by jm
Public preferences for electronic health data storage, access, and sharing – evidence from a pan-European survey | Journal of the American Medical Informatics Association
Results: 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:antoin 
april 2016 by jm
Care.data and access to UK health records: patient privacy and public trust
'In 2013, the United Kingdom launched care.data, an NHS England initiative to combine patient records, stored in the machines of general practitioners (GPs), with information from social services and hospitals to make one centralized data archive. One aim of the initiative is to gain a picture of the care being delivered between different parts of the healthcare system and thus identify what is working in health care delivery, and what areas need greater attention and resources. This case study analyzes the complications around the launch of care.data. It explains the historical context of the program and the controversies that emerged in the course of the rollout. It explores problems in management and communications around the centralization effort, competing views on the safety of “anonymous” and “pseudonymous” health data, and the conflicting legal duties imposed on GPs with the introduction of the 2012 Health and Social Care Act. This paper also explores the power struggles in the battle over care.data and outlines the tensions among various stakeholders, including patients, GPs, the Health and Social Care Information Centre (HSCIC), the government, privacy experts and data purchasers. The predominant public policy question that emerges from this review centers on how best to utilize technological advances and simultaneously strike a balance between the many competing interests around health and personal privacy.'
care.data  privacy  healthcare  uk  nhs  trust  anonymity  anonymization  gps  medicine 
august 2015 by jm
Can we have medical privacy, cloud computing and genomics all at the same time?
Today 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-rights 
february 2015 by jm
Madhumita Venkataramanan: My identity for sale (Wired UK)
If the data aggregators know everything about you -- including biometric data, healthcare history, where you live, where you work, what you do at the weekend, what medicines you take, etc. -- and can track you as an individual, does it really matter that they don't know your _name_? They legally track, and sell, everything else.
As 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  tracking 
november 2014 by jm
Big doubts on big data: Why I won't be sharing my medical data with anyone - yet
These 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  insurance 
february 2014 by jm
UK NHS will soon require GPs pass confidential medical data to third parties
Specifically, unanonymised, confidential, patient-identifying data, for purposes of "admin, healthcare planning, and research", to be held indefinitely, via the HSCIC. Opt-outs may be requested, however
opt-out  privacy  medical  data  healthcare  nhs  uk  data-privacy  data-protection 
january 2014 by jm
21 graphs that show America’s health-care prices are ludicrous
Excellent data, this. I'd heard a few of these prices, but these graphs really hit home. $26k for a caesarean section at the 95th percentile!? talk about out of control price gouging.
healthcare  costs  economics  us-politics  world  comparison  graphs  charts  data  via:hn  america 
march 2013 by jm
Stephen Hawking Has Not Yet Been Murdered by the NHS
hilarious response to mind-boggling US healthcare talking-point derpitude: 'People such as scientist Stephen Hawking wouldn't have a chance in the U.K., where the National Health Service would say the life of this brilliant man, because of his physical handicaps, is essentially worthless.' fantastic
politics  humour  healthcare  via:bwalsh  stephen-hawking  us-politics  derp  morons  funny  nhs  uk 
august 2009 by jm

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