Notes from a ‘small island’ in health research…..otherwise known as INVOLVE

A small island has appeared off the coast of Pakistan following the tragic earthquake there last week.  The consensus of scientific opinion is that, before long, this island will disappear without trace.  In the meantime it is an interesting curiosity, attracting quite a gaggle of geologists and geographers. I wonder if that is how INVOLVE was... Continue Reading →

Survey: Cancer patients and research – the signage is there but not the opportunity to take part

You know how the story goes.  Cancer is way ahead of other conditions when it comes to patients having the opportunity to participate in clinical research.  But there's still lots of room for improvement. Today NHS England has announced the results of the annual National Cancer Patient Experience Survey.  Almost 70,000 patients took part in... Continue Reading →

Our NHS: If there is a patient on board could they please make themselves known to the cabin crew

The NHS would appear to be suffering an in-flight emergency. It is locked on auto-pilot. The cabin crew are unsure what to do. A few are close to panic. The nature of the problem is unclear. The causes indeterminate. No one was trained for this. Cabin crew announcements become more insistent and louder by the... Continue Reading →

Comment: The Sherpa’s story and its relevance to public involvement in health research

I am indebted to a good friend and colleague of mine who, some time ago, sent me this BBC News story from last year.  It reports on the rising concerns among Himalayan Sherpas about the lack of regard being shown towards their needs and the environment as scientists tromp all over the local geography.  To the... Continue Reading →

A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly

So here's my unsubstantiated personal theory. It is that one of the root causes of the problems besetting today's NHS' is our failure to pay proper heed to the growing crisis in accountability and responsibility that has been a feature of our increasingly complex health system over the last seventy years.  From almost the day... Continue Reading →

How your NHS Trust works in mysterious ways when it comes to clinical research

Today the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC) has published the results of a 'mystery shopper' exercise it conducted last year to investigate how well NHS Trusts provide information about clinical research.  You may have seen a piece in last Sunday's Observer which trailed this work and you may hear about it... Continue Reading →

Health Research Authority gets to work on speeding-up research

So there I was yesterday afternoon,  with my biology 'o'level a distant memory to put it mildly, speaking at the annual NIHR Senior Investigators Meeting thinking: 'how did I ever get into this?'  The event brings together the very best of NIHR's  researchers for an update on what's happening across health research.  And this was mentioned... Continue Reading →

NHS leaders on public involvement in services and research

Just thought I would pass on these two pieces by Candy Morris, Research Champion for the NHS, and Mike Farrar, CEO of the NHS Confederation, respectively, about the importance of public involvement in the NHS. Candy's article appears in the Department of Health's regular bulletin 'The Month,' and focuses on public involvement in clinical research.... 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 →

Clinical trials activity report for England highlights progress but much work still to be done

The National Institute for Health Research (NIHR) CRN CC has today published its clinical research activity report for the final quarter of 2011/12.  Some of the data and a good summary of what they mean is also available on The Guardian website. Last year was the first that this sort of information was made widely available.  So... Continue Reading →

The NHS Commissioning Board Draft Mandate and patients in health research

The Shard went up (officially).  And the NHS Commissioning Board Draft Mandate came down from on high.  All on the same day.  Add the odd torrential downpour with its associated misery and these could be Biblical times. I have come to the conclusion that it is my fate to be locked away somewhere remote and with an intermittent... 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 →

Smart guides to public and patient involvement in your local NHS (i.e. Healthwatch, CCGs etc)

Here are four exceptionally useful guides to ensuring good public and patient involvement and engagement in the new local NHS structures such as Healthwatch, CCGs etc. Get smart about engagement series introduction Engagement for commissioning success Working with lay members and patient representatives Working with LINks and local HealthWatch My sense is that CCGs are... Continue Reading →

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