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Join us to develop a joint statement on the use of patient data for research
Just last week, David Cameron named data as one of the five strengths of the UK in life sciences and plans for four new data research centres co-funded by charity and industry were launched. A...
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How many patients are offered opportunities to take part in research?
The Cancer Patient Experience Survey 2011/12 is out today. This is a national survey by the Department of Health, asking cancer patients about their experiences. And for the first time, it asked about...
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The death of IPR?
Yesterday I attended a really interesting conference at the Wellcome Trust on ‘Increasing openness, transparency and collaboration in the life sciences’ with Sir Mark Walport and Sir Andrew Witty, CEO...
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Proposals for a new NHS Constitution published today
Today the Department of Health has published plans to update the NHS constitution and is asking for our comments. The proposed changes include some that are valuable for medical research: they make it...
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Charities and researchers call for greater awareness of patient data use
Medical research charities and the Academy of Medical Sciences have written to the Times today (£), welcoming a consultation on changes to the NHS constitution and calling on the NHS and Government to...
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Our annual conference – Partnerships and collaborations in research
On November 14 we held our annual conference, a great chance for AMRC members to come together as a community, and discuss the issues that are really important to us now. We heard from Earl Howe,...
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Online discussion about patient data in the NHS
This Thursday, the Guardian is holding a live online discussion about Patient data in the NHS. Every time you visit an NHS hospital or your GP, information is recorded and stored. This NHS data is a...
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Shape our response to the NHS constitution
The government is updating the NHS Constitution. This includes adding extra detail laying out how peoples data will be shared and used for research. Patient data collected in the everyday running of...
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What a culture of research looks like
Just before Christmas I was lucky enough to visit the Greater Manchester Comprehensive Local Research Network (GMCLRN – even the acronym is a mouthful!) to see for myself how NHS Primary Care Trusts,...
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Proposed changes to the EU’s update of data protection could be bad for research
AMRC has joined medical research funders to support a statement on proposed changes to the EU law governing the use of personal data, explaining why the Rapporteur’s proposed changes are bad for...
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Your say on our draft statement on access to patient data for research
We are revising our statement on the use of patient data for research. Late last year we held a workshop bringing our members together with invited speakers to talk about public attitudes to the use of...
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The Caldicott Review recommends how personal data should be used for research
The Caldicott Review on information governance in health and social care has published its report today, making recommendations on how people’s personal information should be handled by the NHS and...
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