Nature: Careless Data - slapdash introduction of UK NHS patient database

[Firestormm]

Nature editorial 04 March 2014
Careless.data
The authorities must take the necessary time to remedy the slapdash introduction of a database containing the medical records of the entire population of England.

England’s universal health-care system has potentially an enviable ability to integrate medical records into a data system that benefits patients and researchers alike. What a shame that it is making such a hash of the task, and undermining crucial public and professional trust in the process.

The National Health Service (NHS) in England has postponed the launch of its controversial care.data programme for six months, abandoning its earlier plan to start uploading data from this spring. The sensitive data consist of previously confidential records from people’s consultations with their doctors, such as their family history, diagnoses, prescriptions and the results of blood or other tests.

The data store, managed by the NHS’s Health and Social Care Information Centre (HSCIC) in Leeds, is part of an ambitious scheme to link patients’ doctors’ records with their hospital and other medical data, to create one of the world’s most comprehensive health-care databases. The plan is initially for the NHS to use the data to improve health-care management, with researchers and other users eventually being allowed access.

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[peggy-sue]

I'm very concerned about this. I don't mind my details being used for any pure research, but I will not permit any business to buy any of my information and then use or patent it for profit.
And no insurance company has the right to see any of it.
Unless I get complete reassurance that no business will ever get hold of my info, it will be withheld form the database.

 

[Esther12]

I don't have much trust for a lot of researchers either. I'd rather 4chan had access to that data than no 10s Nudge unit!