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 […]

The truth, the whole truth and nothing but….pharma

Here is a gripping report from this week’s ‘Adweek’ (based in New York) about the new marketing strategies being used by pharmaceutical companies. Don’t be put off by the reference to ‘Obamacare.’ The story is equally applicable to the United Kingdom.  For it is essentially a tale about how disease is being re-packaged. Patient data is the new […]

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 […]

It’s NIHR Friday – Public involvement: did the research network move for you?

NIHR Clinical Research Network Survey Patient and Carer (Lay) Involvement in Research: Your Experience The National Institute of Health Research (NIHR) Clinical Research Network (CRN) Patient and Public Involvement Steering Group is running a survey to capture how being involved in research impacts on patients and carers. You should take part in this survey if […]

New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?

This week, patients got a couple more options for finding out about clinical trials they can take part in. Patientslikeme (which was launched in the United States a few years ago) has unveiled its new new clinical trials site which you can find here.   Patientslikeme is capturing a lot of attention here in the UK […]

How a Dame and the Great British Public might bring an end to the patient data pantomime…

The Health Service Journal (HSJ) has an ‘exclusive’ interview today with Dame Fiona Caldicott.  Dame Fiona has been chairing a review – of information governance in health and social care – ‘Caldicott2.’  Its report and recommendations are due out in just a few short weeks. You have to subscribe to HSJ to read the full […]

OECD wades into clinical trials debate, but statement on public involvement goes awol

The Organisation for Economic Co-operation and Development (OECD) yesterday waded into the increasingly feverish debate about the regulation of clinical trials with a strongly worded recommendation calling on its members to harmonise approval processes.  The recommendation which is worded with the minimum of fuss, is backed by a more detailed explanatory memorandum. But I am […]

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 […]

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, […]

There is no point to the javelin

It has come to this.  The world’s top tennis players rush their shots to beat an 11pm curfew.  Bruce and Sir Paul are turned-off mid-performance.  And they don’t use real javelins in schools. Looking across the the athletics field at my sons’ school sports day, I spied a clutch of children competing in the javelin.  Except this […]

‘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 […]

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 […]