What price our NHS medical data? | @guardianletters

Jonathan Freedland is wrong to refer interchangeably to the NHS and doctors, not least due to the fact of the general loss of public trust in institutions he describes. The headline on his article (We believe in no one with our information – not even our physicians, 1 February) is ironically inaccurate. Hitherto the public could believe in their GPs to seem right after the individual data they hold about them.

The leaflet that Freedland says explains to the public the new care.data undertaking does not even refer to it by name. Nor is NHS England pointed out, despite it currently being the organisation responsible for the programme and the leaflet. The Overall health and Social Care Information Centre (HSCIC), the body in fact harvesting patient details from GPs, is not even identified.

With the NHS brand at the start off and finish, the leaflet explains what “we” will do with patient health information – with no saying anywhere who “we” are. The woeful lack of clarity does not engender confidence and trust. It really is not adequate to hide behind the NHS logo.
Dr Alex May possibly
Manchester

• Better collective population health data for research purposes is commendable. The sale of identifiable personal confidential info is not. Some individuals may want to help the 1st and opt out of the second becoming employed for purposes for which they have not given explicit consent. No matter what the assurances in the NHS leaflet, in the information available on-line (www.hscic.gov.uk), the government makes no secret of its intentions to sell what ever information the industrial industry desires to acquire. The table of HSCIC information linkage and extract support costs 2013/14 includes prices for promoting identifiable private data, particularly a “1-off extract tailored to the customer’s specifications of specified information fields containing patient identifiable information, sensitive data products or both”. This has nothing to do with sharing healthcare data about ourselves so that we can be handled wherever we are in the NHS, which will carry on. Human fallibility becoming well evidenced and in spite of political assurances about information security (trustworthy following Snowden?), many of us will want to opt out of allowing our personal info to be provided for sale in this way.
John Veit-Wilson
Newcastle on Tyne

• The day right after your front-web page lead (Patient data to be sold from NHS database, twenty January) I acquired the NHS leaflet on the topic. This concurrently declares that “Details that we publish will in no way recognize a particular man or woman” and, on the up coming web page, “If you do not want details that identifies you to be shared outdoors your GP practice, inquire the practice to make a note of this.” Why do I not discover this reassuring?
Edwina Rowling
Ditchling Sussex

• Following the Guardian’s coverage, I checked the NHS leaflet for particulars on opting out. As there was no reference to deadlines on it, I rang the patient data line and was informed that I had 4 weeks from the time I obtained the leaflet. Data would be included in the technique on a postcode basis from spring. I wonder what achievable motives there might have been for omitting this?
Christine Saunders
Hampton, London

• While information extracted beneath the clinical practice study datalink (CPRD) may possibly effectively be completely anonymised, the information extracted and uploaded to the HSCIC by the care.‌data undertaking is most surely not (Sharing NHS healthcare information will be vital for bettering healthcare, 24 January, theguardian.com). It is identifiable information, is stored by the HSCIC as such, and can for that reason be disseminated to organisations, both research and non-analysis, in anonymised, pseudonymised and clearly identifiable formats. Sufferers have no say in which elements of their uploaded data, when, to whom or for what explanation their data will be provided to organisations.

Dr John Parkinson talks about needing “every single GP to enable their practice to join the technique”. CPRD is voluntary. The care.‌data venture is compulsory – practices can’t refuse to upload patients’ sensitive data, due to the fact the Well being and Social Care Act compels them to.

Decision, either for the surgery or for their sufferers, plays no component in care.data – the determination has been manufactured for them. All patients have is the right to object and to reverse that selection – to take back control of their medical information.
Dr Neil Bhatia
GP in Hampshire and author of the web site www.care-data.information

What price our NHS medical data? | @guardianletters