Your report (Patient information to be offered from NHS database, 20 January) is yet another illustration of the betrayal by this government of the values of the NHS. Andrew Lansley stated there would be “No decision about me with out me” when the health and social care bill was going via parliament, yet the leaflet assumes consent for patient records to be uploaded except if one writes to one’s GP to object to this. The government’s record with regard to maintaining information confidential is not great and the earlier attempt to place all records on-line so as to improve patient care failed lamentably. It would be significantly less costly for patients to request their GP to e-mail them the relevant info about their historical past and treatment method which could then be downloaded on to a memory stick and kept in one’s wallet, handbag or on a keyring, so the info is obtainable in the situation of an emergency admission to hospital.
The leaflet describes the rewards to analysis and the likelihood of organizing solutions greater, but the elimination of strategic wellness authorities that used to program services regionally, and the common administrative chaos and lack of clear lines of accountability in the new program, are not able to be remedied by collecting masses of data from individual GP records. Ramesh Randeep is very proper in his analysis of the circumstance, which is all about the “NHS being open for company”.
Wendy Savage
President, Maintain Our NHS Public
• Your post had some omissions. No info can be launched except if an independent advisory group that advises the Well being and Social Care Data Centre (HSCIC) agrees that the release of it would immediately advantage patient care. Once it is established that this is the case, and the example of insurance businesses wanting to determine premiums would plainly not meet this criterion, a contract is signed. Breaking it would indicate fines or criminal sanctions from the Info Commissioner’s Workplace if any identifiable data was either leaked or utilized by the business. Patients and their carers ought to know that no data will be created offered for the purposes of selling or administering any kind of insurance coverage, as this would break these rigid rules. The information will be issued on a cost recovery basis and not “offered”.
Your readers need to be reassured to know that the HSCIC board last week agreed that a report detailing who we give information to and the grounds on which it has been released, will be produced public on the site every quarter. We are committed to the public knowing what is being carried out with their information as nicely as to men and women realising they have a appropriate to object, if they really feel uncomfortable with the process. I hope your article assists motivate an intelligent, grown-up debate about this considerable change that could have a great positive affect on both health-related research and well being support planning.
Kingsley Manning
Chair, HSCIC
• Alice Bell (No debate on this data, 20 January) leaves out the key crucial web site. The Large Opt Out campaigners have given that 1996 fought to safeguard the confidentiality of health care records towards successive governments’ programs to place every single NHS patient’s healthcare record in a central data financial institution – without having either the patients’ information or consent. The extremely successful campaign web site has each info and suggestions how not to have one’s healthcare record automatically included. There are health-related matters several may wish to maintain confidential, such as psychological overall health, abortion, cancer etc which may possibly have an effect on their employment or insurability. Far from there being no debate, the Huge Opt Out, collectively with powerful stress coming from the health care occupation, was productive.
We are informed we can opt out but of what of is unclear. The argument our GP, dentist or hospital can share our computerised health-related information to improve patient care sounds realistic. But minor is getting said about the fact that the central information bank is designed purely as a resource to sell to researchers. It will make no direct contribution to patient care. So individuals get nothing in return for the government fairly significantly appropriating our data.
Nor do we get any say in what type of investigation projects are to be provided entry to our information. We are to be reassured they will have an ethics advisory body but all the legislation specifies is that they need to be experienced researchers. Yet again, though the legislation trumpets the anonymised and pseudo-anonymised information, this reassurance is spoilt by that section in the legislation which says researchers can underneath specified situations have entry to our personalized identities. There is nonetheless time to checkout the Large Opt Out internet site and choose no matter whether you want to remain in or opt out.
Hilary Rose
London
• Your article highlights the use of our personalized health-related information for investigation purposes, with the NHS variety as a key “patient identifier” to link diverse NHS sources to the very same patient. At the moment, HIV companies are almost alone in not always employing the NHS quantity because of the further confidentiality considerations for a stigmatised issue. But that implies men and women with HIV get rid of out on the substantial benefits for research into how nicely the NHS across its distinct companies is meeting their wants. HIV clinics need to use the NHS number consistently if we are to identify efficiently any locations where NHS treatment and care can be enhanced. But people with HIV should also have a appropriate to opt out of this kind of information collection for investigation functions if they are unhappy about it. The proper to opt out of such investigation use of one’s information is not always enshrined in law – it demands to be, urgently.
Yusef Azad
National Aids Trust
• The Division of Health’s glossy leaflet sets excellent shop by the assertion that data will not have info which will recognize patients but, in its concluding paragraphs, it states that patients who do not want data that identifies them to be shared outdoors their practice must [opt out]. So is it saying that the data be unidentifiable – or not? The DoH will de facto get its way because most individuals will not be bothered even to read the leaflet. Those who do and choose to opt out will put a further strain on tough-pressed GP practices by means of the enhanced bureaucracy involved.
Brian Saperia
London
Lack of debate on the sale of patient info | @guardianletters
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