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
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…’
Excuse my laziness but it is Saturday. Here's a copy of a press release put out by the a Health Research Authority (HRA) on Wednesday about a call (in essence, a survey) they are doing for good practice in identifying potential participants for research studies. The results of the work will be published by HRA … Continue reading Health Research Authority looks for good practice in identifying research participants – survey.
The aforementioned survey is after the blog post if you can't stand the thought of reading this intro..... I somehow think that 'data' will be a significant feature of my life over the next few weeks. Next week I am a panellist at the NIHR/ABPI conference '360 of Health Data: Harnessing Big Data for Better … Continue reading Swipe here to donate…Tissue donation for research: what’s your view? Blog and survey.
It is National Poetry Day today, October 3rd. Which means I get to inflict more of my poetry on you. Sorry. Send You can download me, You can put a USB stick Where it hurts And empty my bad memories. You can link it, crunch it. Anonymise, Analyse, Get the hell out of IT. Big … Continue reading ‘Send’ (a poem about personal data) for #NationalPoetryDay