Quite a few of Saturday's papers covered the health secretary's announcement that he wants the NHS to offer healthy 'volunteers' the option of paying to have their DNA analysed. The goal is to recruit 5 million volunteers resulting in masses of data which can be used by researchers to further understanding and develop new treatments. … Continue reading A view about the health secretary’s announcement on healthy volunteers and DNA tests
If the day has a 'y' in it then I guarantee that policy-makers and experts somewhere across Whitehall and Westminster are meeting to plot a way through the stalemate otherwise known as the 'use of health data.' That is: how we are going to use my and everyone else's medical records to make people better now and in … Continue reading From A to B on using medical records to help people get better
The Nuffield Council on Bioethics have today published their report: 'The collection, linking and use of data in biomedical research and health care: ethical issues' following months of inquiry by an expert working group Chaired by Professor Martin Richards. Here's a copy of the actual report. There is much coverage in the media already including the … Continue reading Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research
Sir Nick Partridge's review published today, of data releases by the NHS Information Centre, is an elegant demolition of all that has gone before in the way in which medical records have been commoditised and shared with public and private sector organisations. Everyone should read it. I am sure that many better informed people than I … Continue reading Partridge Review’s elegant demolition of past practice on personal data offers opportunity for fresh start with the public
Simon Stevens, the relatively new NHS Chief Executive, put innovation front-of-house in his speech to the NHS Confederation yesterday. He identified it as one of three elements crucial to 'future-proofing' the NHS for the challenges ahead. You can read the full speech here. But I have also included the relevant extract below as it is worth reading. A few points … Continue reading Simon Stevens puts innovation and patients as innovators front-of-house in NHS
The fundamental issue at stake here is respect for the citizen. The last month of debate about care.data feels like the previous ten years of discussion about the sharing of personal data bottled as a concentrate solution of ill-temper or should that be distemper? Many will say that NHS England - who yesterday announced a … Continue reading Comment: So what next for care.data?
There's a big push on #patientdata at the moment. Leaflets explaining how patient data will be shared in the future are being stuffed through people's letter boxes. This is part of an initiative called 'care.data.' Medical research charities have meanwhile funded a national newspaper advertising campaign exhorting the benefits of sharing patient data for research. The … Continue reading Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’