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L'entrée des nouvelles technologies à l'hôpital
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Patients need to have control over their own information if care.data is to work

Patients need to have control over their own information if care.data is to work | Hopital 2.0 | Scoop.it
The consent process for opting out of care.data should be clear and transparent, and patients should be the first to have access, says Mohammad Al-Ubaydli

The case the government makes for care.data, that allowing medical researchers access to patient data will result in new cures, is a hard one to oppose. If the case were so simple then most people, including me, would welcome it.

The question that the care.data effort brings to light is a simple one – why has the NHS moved so quickly to provide patient medical records to third parties and so slowly to provide data to the patient themselves? For me, this is entirely the wrong way round.

The consent process for opting out of care.data is neither clear nor transparent. The questions page states that the record will not contain information that can identify a patient – and it's true that NHS number, postcode, full name etc will be removed. However, it's also true that each patient's record will be linked to a "meaningless pseudonym that bears no relationship to their 'real world' identity".

The information being shared by care.data is substantial. They exclude sexual health data, such as HIV diagnosis or abortions – but they include mental health data. They exclude written notes – but they include actual diagnoses, medications and laboratory results.

In addition, the records will be shared with third parties a patient might not want to have their data. HSCIC public assurance director Dr Mark Davies has already said that, in the eyes of the law, the government can't distinguish between a request by an insurance company and a medical researcher to access the database. For them, it makes no difference. But it makes a difference to the patient, who could, would and should distinguish. Indeed, at the moment the patient isn't even allowed to see data in their own record that third parties will have access to.

Government representatives repeat in interviews that they need to open a debate on care.data – so let's have the debate now while plans have come to a temporary halt. We know from other countries that a proper discussion on government-controlled data leads to different outcomes. ...

The government says that care.data can bring huge benefits. If so, it needs to prove what these benefits are and start by giving the patients themselves data about their own bodies.

Dr Mohammad Al'Ubaydli is the CEO and founder of Patients Know Best


Via rob halkes
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rob halkes's curator insight, March 6, 8:19 AM

National health record systems should be furthered by giving the patient first access to their information. First, because patients are best suited for checking those data for which they are the only right source for checking it, e.g. their medications: think about actual use. They are the sources for checking "actuality": what is actually being "used", "validity": is the right information given - does it represent what is "on" and what not, and "reliability" is everything in the right terms and details (doses for instance). That is the instrumental use of patient access, besides the principle use of it: patients ought to have insights in their formal data and functional use of it: by sharing same information and data the protagonists in care for patient's health can do a better job together for better health outcomes. ..


Julie Marker's curator insight, March 6, 2:05 PM

Australian patient don't have access to our own health data, diagnoses, medications, lab test results;  surely that is a fundamental right!  The PCEHR is the dream, not the reality of delivering this.

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Let Patients Help | The New Excellence: Consumerism Comes To The Medical Market - Forbes

Let Patients Help | The New Excellence: Consumerism Comes To The Medical Market - Forbes | Hopital 2.0 | Scoop.it
Partnership: the model of the Society for Participatory Medicine “Let Patients Help” is not just the title of this blog, it’s the catchphrase of my cause.

Via ET Russell
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ET Russell's curator insight, February 8, 2013 1:34 PM

Love this quote in the article:
"I’m an e-patient: equipped, enabled, empowered, engaged. I’m no clinician, but I do everything in my power to help them, to play an active role in my own care, and even in the design of care."