New @HRA_Latest @OfficialNIHR data on UK public attitudes to health research highlights need to work with under-represented groups to break down barriers #diversity

White, middle-class and well-connected - and that's just the patients: is this the health research culture we wish to see in the UK? Ever since it was established in 2011, the Health Research Authority (HRA) - the UK regulator of health research whose mission is 'to protect and promote the public interest' - has commissioned... Continue Reading →

Patients and researchers – sparring partners not hostile combatants

I am in Helsinki, Finland, for a few days this week, sitting on a review panel for the 'Joint Programme - Neurodegenerative Disease Research.'  It is the first time that this programme has involved patients in its review process for funding research so it feels a bit of a milestone moment.  This, after twelve months, of... Continue Reading →

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 →

Text of speech to INVOLVE 2012 – Public involvement in research: would you like that shaken or stirred?

Public involvement in research: would you like that shaken or stirred? So, ladies and gentlemen, there I was on Saturday afternoon, at the pictures, watching the new James Bond movie, ‘Skyfall.’  This was background research for today you understand; listening to Adele dolefully sing: ‘This is the end’ which is the opening line of the... Continue Reading →

Round round get around I get around – Caldicott2, patient data, dementia portal and more!

So sang The Beach Boys who were on Radio 2's 'In Concert' this week.  Not that I'm a great fan but it seemed apposite given my week.  This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow,... Continue Reading →

PM’s Global Health Policy Summit Speech signals the personal as well as phenomenal

You can find the full text of the Prime Minister's speech at the Global Health Policy Summit in London today here. David Cameron's remarks have caught the headlines because of his announcement about the new Phenome Centre. But, as important, are a number of other areas of his speech. These deal with the importance of the... Continue Reading →

Caldicott 2 public evidence sessions

If you are looking for Olympics-mayhem avoidance strategies then what better than taking the opportunity to share your views on Information Governance. My good colleagues at INVOLVE have reminded me to remind you, that Caldicott's remaining public workshops will take place on 8 August in Birmingham and on 22 August in Oxford.  The one in Leeds today was... Continue Reading →

‘Caldicott 2’ Evidence gathering session on research – ‘patients and the public’ questions

'Caldicott 2' is the health and social care information governance review being conducted by Dame Fiona Caldicott with a due date for completion this autumn.  The title of the review is 'Information: to share or not to share?' I passed by the official website today and noticed that it now has a huge amount of information... Continue Reading →

Patients, ethics committees and clinical research – NRES/INVOLVE report highlights ‘public’ challenge for new health research regulator (HRA)

Sometimes you are just defeated by the brilliance of others.  So, if you are looking for a wonderful summary of what the autumn statement means for health research, then I can highly recommend Becky's Policy Pages. Clearly, the opening up of health data is the single most important strategic announcement in today's statement - much... Continue Reading →

Here's hoping this works.  So, (sorry John Humphries et al) rather than send you all off somewhere else, here is the pdf of the whole patient information leaflet 'Your health records saves lives' which I wrote about yesterday.  Click here: PHR LIFT England online As I say, please pass it on...for me. And you can... Continue Reading →

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