Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research

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 →

INVOLVE launches new benefits advice service for public involvement in NIHR research @NIHRINVOLVE #ppibenefitsadvice

This is an important and timely intervention by INVOLVE to ensure people get the right advice and support about how payment of fees and expenses for their public involvement in NIHR might affect their receipt of state benefits.  Please read the following for more information on how this service will operate. With thanks to our... Continue Reading →

Breaking Boundaries review of public involvement in the NIHR – Update Ahead of #INVOLVE2014

So, as you can imagine, I am limbering up today and tomorrow in preparation for the INVOLVE Conference - 'Changing Landscapes' - which takes place in Birmingham later this week. That means sit-ups, press-ups, gargling water and mnemonics to remember the difference between participation, engagement and involvement and other useful stuff like that. It should be... Continue Reading →

NIHR Friday: BioResource launch has volunteers at its heart

Delighted to see today's announcement by the National Institute for Health Research (NIHR) of the new NIHR BioResource.  The importance of the new BioResource (the main website for the BioResource is here) is underlined by the fact that not one Minister but both the Secretary of State for Health, Minister for Health plus the Chief Medical Officer, Professor... Continue Reading →

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