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    I very much support the plans by NHS England to relaunch care.data in test or pathfinder regions before rolling it out across the country, but there are still too many issues that need to be resolved before this can safely take place. To rush this new initiative through before the general election is madness, particularly as it is asking people to take fundamental decisions about what happens to their highly personal medical data. I appreciate that we are talking about “test areas”, but very often what happens in test areas goes on to be accepted practice without any further consideration. […]
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     Is  It Right That Information About Me Which Is Not Completely Anonymous Should Be Used Without My Explicit Consent? If there is a genuine risk of you being identified, of course they shouldn’t. But many forms of research need to count people with particular conditions and the sample needs to be representative of the whole population so they would be distorted if individuals had to consent. What is at issue is information where it would take a great deal of effort to link to an individual. For example to study whether proximity to a main road causes asthma you would […]
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    There are currently proposals in the English NHS which involve the making available of patients’ health and social care records across the health service. This is now possible because these records are held in electronic form and can easily be duplicated and shared. One obvious advantage of such a process is that when people need treatment or care those delivering that treatment or care will be easily able to access the relevant records and draw on the information in them to tailor the treatment or care to the needs of the patient. However there are issues: Anonymity – when records are […]
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    NHS England’s purpose is to secure high quality care for all, now and for future generations. We believe passionately that one of the best ways to improve services is through a combination of greater transparency in how well different parts of the NHS are providing care; and more participation by citizens, patients and clinicians in the design of NHS services. Together, these twin pillars of transparency and participation will lead to safer, more equitable, and more compassionate health care for us all. The importance of data The only way to determine whether the NHS is achieving its aim of universal, […]
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