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

Is it an industry or a movement we are creating?

In his Guardian blog yesterday, Dick Vinegar, asks a genuinely good question:  'Who is fighting the patient's corner?' He writes about his recent attendance at a Westminster Health Forum conference about Healthwatch, and voices concern that all we are doing is creating just another bureaucracy in the name of patients.  A thick, muddy, layer of … Continue reading Is it an industry or a movement we are creating?

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

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 The NHS Commissioning Board Draft Mandate and patients in health research

New science networks herald more fertile ground for health innovation

If contemplating NHS change rest assured, and this from one who once visited Mt Etna, that the lava does solidify, some old structures do survive, and it is possible for new ones to be built with solid foundations. Herewith some new and some not so new 'kids' on the block in the world of research. … Continue reading New science networks herald more fertile ground for health innovation

Are you a patient? Then, I’m holding you for questioning. You have the right to…..

Just in case you had missed it, it's all about patient experience from now on!  And a good thing too. Or, at the very least, it seems the intention is to ask people more questions about their experience.  A lot more questions in fact. In the new world, I wonder, will we be met by NHS 'chuggers' … Continue reading Are you a patient? Then, I’m holding you for questioning. You have the right to…..

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

Survey raises questions over NHS research

So it was an early start for me today, doing radio interviews for International Clinical Trials Day today.  I'll post the links to one or two when available.  Here's the press release from NIHR CRN which was the news peg for the interviews. NEWS RELEASE TEXT (HEADLINE AS ABOVE) The results of a new survey, published on … Continue reading Survey raises questions over NHS research

DH and charities reach acoRD over medical research costs

Divvying up the costs of conducting research in the NHS funded by medical research charities is an intricate business.   Who pays for that research nurse, their time in administering the extra treatment required in a clinical trial, the procedures and equipment needed as part of its conduct, the oversight and governance needed to ensure that things are done … Continue reading DH and charities reach acoRD over medical research costs

A few more ‘£s’ and I’ll be opening my own Wellcome Collection…just keep those surveys coming

If only petrol was as plentiful a resource as public attitudes.  There is no end to the extent to which we can mine what the public thinks about this, or that. Occasionally a survey will hit a rich seam of information and insight.  Then again, so numerous are those who are drilling into the public mindset nowadays, that I … Continue reading A few more ‘£s’ and I’ll be opening my own Wellcome Collection…just keep those surveys coming

Patient involvement in the Health and Social Care Act: National Voices Briefing

National Voices have published an excellent briefing on what the Health and Social Care Act (which received Royal Assent today) means for public involvement in care.' And how we need to actively follow-up with the new NHS structures and bodies established by the legislation to ensure they keep to the letter of the law.  Read … Continue reading Patient involvement in the Health and Social Care Act: National Voices Briefing

Social media and medical research, a story from Oz

I am in international mood today.  From the United States to Australia.  Unfortunately not via Hawaii. This was sent to me this morning and it's basically a report of a paper appearing in the Journal of Internet Medical Research about the viability of using social media in medical research. Interesting snapshot discussion around the pitfalls - i.e. … Continue reading Social media and medical research, a story from Oz

The duty falls on all of us to issue that wake-up call to the NHS about its research mission

Last week, medical research charities among others hailed a series of Government amendments made to the Health and Social Care Bill.  These place 'a strong duty across the Secretary of State, the NHS Commissioning Board and Clinical Commissioning Groups to promote research and the use of research evidence.' The amendments are in response to persistent lobbying; their … Continue reading The duty falls on all of us to issue that wake-up call to the NHS about its research mission

Social care research opportunities

We don't talk nearly enough about social care research.  I sometimes wonder whether we have 'over-medicalised' the health research agenda at times, so that all we shout about are new medicines and treatments - me included.  It is a trend that seems counter to the needs of our society and also the changes in the … Continue reading Social care research opportunities

That article about patient questionnaires: the NHS ain’t no Argos

This article in The Guardian about how the NHS has much to learn from the retail sector in the way it designs and uses patient questionnaires has prompted a lot of angry comment. To be fair, it makes one or two good points. These include the fact that we are too slow in incorporating patient … Continue reading That article about patient questionnaires: the NHS ain’t no Argos

I’ve got a pile of irony to do tonight – from Scottish independence to NHS reform

On my train journey from Edinburgh this morning, I listened to a BBC Radio Scotland phone-in about the implications of Scottish independence.  The intricacies of a possible de-coupling from the UK are fascinating - from the economy to people's pensions, to the NHS. I've yet to read an article written specifically about the pros and cons … Continue reading I’ve got a pile of irony to do tonight – from Scottish independence to NHS reform

Share your experience of public involvement in research: INVOLVE 2012 Conference call for presentations

  Doing this remotely so apologies if this doesn't work/come out very well: INVOLVE 2012: Putting people first in research Conference call for presentations is now open Our eighth biennial INVOLVE conference will take place on 13th and 14th November 2012 at the East Midlands Conference Centre in Nottingham. The conference will bring together members of the public, service users, researchers, research … Continue reading Share your experience of public involvement in research: INVOLVE 2012 Conference call for presentations

Neurological Alliance issues wake-up call to Government and NHS over neurology services

The Neurological Alliance which represents over 70 charities in the field has wheeled out its big guns today to highlight the lack of preparedness across the NHS to meet the needs of increasing numbers of people with neurological conditions. It really is wheeling out its big guns such as Steve Ford at Parkinson's UK and … Continue reading Neurological Alliance issues wake-up call to Government and NHS over neurology services