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'Better information means better care'. That's the slogan attached to the Government's NHS data sharing initiative. But is it really a win-win situation? Or is there a downside?


Known as care.data, the NHS England's strategy to take data from GP records and upload to a central database seems to have attracted as much scepticism as it has praise. Few people can argue with the principle: joining up patient data from different parts of the healthcare system to provide an overview that enables the quality of care and health services to be assessed and improved for all. However, as was evidenced by the much-criticised launch of the initiative earlier this year, it's a touchy subject. Therefore, it's vital to allay people's fears about confidentiality, security and commercial exploitation.

We all know that a variety of health professionals can be involved in the patient care cycle, including GPs, community health workers, psychiatrists, mental health nurses, physiotherapists, radiographers, occupational therapists and speech and language therapists. Until now, because all these different departments have recorded and stored their patient information independently, it has been prohibitively time consuming, not to say impossible, for researchers to obtain useful data that gives a full picture of patient care across the system. 

Under the care.data scheme, a patient's date of birth, postcode, NHS number and gender (no name) will be used to link all care records in a centralised, secure database, managed by the Health and Social Care Information Centre (HSCIC). This shared information will enable NHS researchers and planners to find more effective ways of preventing, treating and managing illnesses, make sure any changes or improvements to services reflect local needs, understand who is most at risk from particular diseases, improve care outcomes, and more.

This will also mean better data being available to a whole range of healthcare professionals involved in research, from biomedical scientists and clinical scientists to forensic psychiatrists, forensic psychologists and radiologists. However, it's important that proper safeguards are in place to reassure the general public that the wrong people won't have access to their personal data. As the Wellcome Trust's Head of Policy, Nicola Perrin, put in an article published on the Trust's website in January 2014: "Without public trust, biomedical research can't reach its full potential."

The key principle, which was badly communicated in the launch of care.data, is that most patient data will be anonymised. Should there be a need for a data user to see identifiable data, they will have to obtain special consent via the patient's GP. 

The care.data initiative was originally scheduled to start in April this year. However, the launch was delayed following opposition from GPs and civil liberties campaigners. Privacy was the main concern, with experts saying that the HSCIC had not been clear enough about the safeguards against the data being hacked or used for commercial purposes by, for example, insurance actuaries. Many say these concerns have still not been addressed. However, the Government is pressing on with the scheme regardless, with pilots due to launch soon in six Clinical Commissioning Groups, involving up to 265 GP surgeries and 1.7 million patients.

The scheme continues to divide opinion. As you might expect, health professionals are generally positive, particularly those who are involved more closely with research, such as biomedical scientists, clinical scientists and radiologists. The care.data scheme is seen as an important step towards data sharing as one of the general guiding principles for healthcare reform. In an article for the British Institute of Radiology, Michelle Nicholas from Canon Europe cites a 2009 eHealth Initiative Survey of health information exchanges in the USA, which showed that "data sharing systems significantly reduced administration time spent handling lab results, radiology reports and clerical tasks".

Andrea Pearce, Development and Research Unit Head at the Chartered Society of Physiotherap(CSP), has argued that the next step should be to give patients online access to the information in their health records. In an article for the CSP website she advised physiotherapists to start thinking about the implications for their record keeping: "Reducing 'data burden' through recording information once, and using that information for several reporting purposes is an efficient way to run a service... Ideally you would collect patient-related information and your clinical findings from your consultation in a structured electronic record-keeping template."

On the other hand, there are plenty of dissenters, including campaigning organisation 38 Degrees, whose online petition earlier this year attracted 150,000 respondents, 90% of whom said they would opt out of care.data. The concept of data sharing has even spawned its own self-appointed watchdog, medConfidential. Its mission is to expose abuses of patient consent and confidentiality and it has been one of the leading critics of the care.data scheme. In response to the launch of the pilot projects, medConfidential Coordinator Phil Booth told the Daily Telegraph, "The basis of the programme is unchanged – identifiable medical information will be extracted from the GP record of every man, woman and child in England.  This data will be centralised and made available in various forms to an open-ended array of organisations and companies for ill-defined purposes."

Alarm bells have also been rung by the Government pressing ahead with the set-up of Accredited Safe Havens (ASHs), alongside the care.data trials. ASHs are regional data centres which will provide "a secure environment within which data that could potentially identify individuals can be lawfully processed for a limited range of approved purposes, under controls that minimise reliance upon identifiable data and constrain how the data is processed in the ASH." By many this is seen as embodying the most controversial features of the original care.data scheme, with major uncertainties about what the data might be used for and in whose hands it might end up.

Few healthcare strategists, researchers and frontline professionals doubt the benefits of sharing medical data for research and analysis purposes. And many see the considerable benefits for clinical care of general data sharing principles. For example, a recent review of a multi-agency data sharing project in Missouri, USA, launched in 2003, shows that it has helped reduce hospital admissions and A&E visits, as well as improving physician prescribing practices. However, getting the public onside is another matter. Until the thorny issues of confidentiality and security are properly addressed, the voices of doom will continue to make themselves heard.

Are you a health professional with something to say about the care.data scheme or the general concept of data sharing? Perhaps you're a potential data user, such as a biomedical scientist, clinical scientist or radiologist? Maybe, as a physiotherapist, occupational therapist or speech and language therapist, you can see the potential benefits for the healthcare system? Or perhaps, in more general terms, you're concerned about what effect the move towards data sharing will have on the way you record and store patient information? We want to hear your views. Comment on this article or email us.

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