Forgive me. For once, I write with a semi-official hat on. But this afternoon feels like a bit of a milestone moment in lifting public involvement in research ever higher on people's agendas. If you have heard me speak in public then you will know I start by saying how proud I am that the … Continue reading NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report published
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 Notes from a ‘small island’ in health research…..otherwise known as INVOLVE
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 … Continue reading The truth, the whole truth and nothing but….pharma
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 Survey: Cancer patients and research – the signage is there but not the opportunity to take part
Sometimes it is the lot of the blogger to feel like the producer of 'Have I Got News For You.' One's research can taken you to all sorts of places you didn't know existed. Then again it can also turn up some gems. This morning I blogged about the WHO report on medicine priorities and … Continue reading Moorfields research team reports on benefits of public involvement to eye patients and staff
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 … Continue reading It’s NIHR Friday – Public involvement: did the research network move for you?
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 … Continue reading New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?
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 interview … Continue reading How a Dame and the Great British Public might bring an end to the patient data pantomime…
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 … Continue reading OECD wades into clinical trials debate, but statement on public involvement goes awol
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 How your NHS Trust works in mysterious ways when it comes to clinical research
At the UK Dementia Research event last week, I got chatting to Professor Richard Wade-Martins who is Principal Investigator at The Oxford Parkinson's Disease Centre. This was in the queue for the cloakroom I should add, and following my witterings during the afternoon panel session. Richard leads a five year programe of research in Parkinson's disease at … Continue reading Patients, David and Sally, talk about their part in the Parkinson’s Monument Discovery Project
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!
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 … Continue reading There is no point to the javelin
'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 ‘Caldicott 2’ Evidence gathering session on research – ‘patients and the public’ questions
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
I was very privileged to be asked to give the Furlong Christmas Lecture a few weeks ago. I hope this doesn't seem egotistical but here's the text of that lecture amended with useful links etc - it touches on and rehearses themes that will be familiar to those of you who have visited the blog … Continue reading Research is for life: making research part and parcel of the patient journey
Next week I shall be taking part in my first meeting as a lay member of NIHR's 'Invention 4 Innovation' programme. I have had a number of conversations with people recently about how patients are and should be involved in the field of what is jargonistically called 'technology pull' - getting new technologies into health … Continue reading Technology pulll-through in research and the role of the public