jm + nhs   8

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 
20 days ago 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
Health privacy: formal complaint to ICO
'Light Blue Touchpaper' notes:
Three NGOs have lodged a formal complaint to the Information Commissioner about the fact that PA Consulting uploaded over a decade of UK hospital records to a US-based cloud service. This appears to have involved serious breaches of the UK Data Protection Act 1998 and of multiple NHS regulations about the security of personal health information.


Let's see if ICO can ever do anything useful.... not holding my breath
ico  privacy  data-protection  dpa  nhs  health  data  ross-anderson 
march 2014 by jm
Care.data is in chaos. It breaks my heart | Ben Goldacre
There are people in my profession who think they can ignore this problem. Some are murmuring that this mess is like MMR, a public misunderstanding to be corrected with better PR. They are wrong: it's like nuclear power. Medical data, rarefied and condensed, presents huge power to do good, but it also presents huge risks. When leaked, it cannot be unleaked; when lost, public trust will take decades to regain.

This breaks my heart. I love big medical datasets, I work on them in my day job, and I can think of a hundred life-saving uses for better ones. But patients' medical records contain secrets, and we owe them our highest protection. Where we use them – and we have used them, as researchers, for decades without a leak – this must be done safely, accountably, and transparently. New primary legislation, governing who has access to what, must be written: but that's not enough. We also need vicious penalties for anyone leaking medical records; and HSCIC needs to regain trust, by releasing all documentation on all past releases, urgently. Care.data needs to work: in medicine, data saves lives.
hscic  nhs  care.data  data  privacy  data-protection  medicine  hospitals  pr 
march 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
Hospital records of all NHS patients sold to insurers - Telegraph
The 274-page report describes the NHS Hospital Episode Statistics as a “valuable data source in developing pricing assumptions for 'critical illness’ cover.”
It says that by combining hospital data with socio-economic profiles, experts were able to better calculate the likelihood of conditions, with “amazingly” clear forecasts possible for certain diseases, in particular lung cancer.
Phil Booth, from privacy campaign group medConfidential, said: “The language in the document is extraordinary; this isn’t about patients, this is about exploiting a market. Of course any commercial organisation will focus on making a profit – the question is why is the NHS prepared to hand this data over?”
nhs  privacy  data  insurance  uk  politics  data-protection 
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
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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