What should we make of the latest figures from INVOLVE and the Health Research Authority (HRA) showing which funders are best at public involvement in research? In a re-run of an joint-exercise first done in 2010, INVOLVE and the HRA looked at the public involvement component of over 1100 research applications that went before research… Read More Who are the good, the bad and the ugly at involving the public in medical research? New comparative figures for Government, charities and industry
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… Read More Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research
The Medical Research Council (MRC) has published a refreshed communications and engagement strategy. There is a section on public involvement on P12 of the document which is the fullest narrative I have seen of their corporate intentions around this aspect of working in partnership with the public. It is a good document and important to… Read More MRC publishes new communications and engagement strategy (plus new film!)
Scotland has arguably lagged behind the other three nations of the UK in embedding public involvement in research. There has undoubtedly been some good work, not least on things like the sharing of patient data issues and clinical trials recruitment (the Scottish Health Research Register SHARE being an innovation of note). But research funders north of… Read More Scotland looks to get ahead on involving patients and the public in health research: new strategy
Hacking in this context is what we call ‘bringing people with different views and skills together to work on problems.’ [Sorry to disappoint the headline chasers but I hope you’ll stay with me] And ‘hackathons’ – events where such hacking activity can take place – are increasingly common across the health arena as a means of solving problems. In… Read More Patients hack medical research in planned attack
Excuse my laziness but it is Saturday. Here’s a copy of a press release put out by the a Health Research Authority (HRA) on Wednesday about a call (in essence, a survey) they are doing for good practice in identifying potential participants for research studies. The results of the work will be published by HRA… Read More Health Research Authority looks for good practice in identifying research participants – survey.
The Generation R event – organised and delivered by young people in research – has to be one of the highlights of my year. You can find a write-up from the September event here. Today the Generation R crew sent me a postcard about what is happening next. Note the key messages to emerge from the… Read More Young people in research have sent me a postcard, have a look….
The following is a more polished and slightly amended version [the bits in brackets I didn’t say] of the remarks I made at the ABPI/NIHR conference about big data which took place in London yesterday. The title of the conference was: ‘360 of Health Data – Harnessing big data for better health.’ I had written… Read More Big data, big stage, cue patients as the leading actor. Remarks at #bigdata2013 on the patient agenda
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… Read More NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report published
I hope you’ll forgive the fact that what follows is the news release but I am part of the team presenting with Jonathan Sheffield at next week’s British Science Festival and I really couldn’t put it better than this. The ‘live trial’ is very exciting indeed and the first dip in the water for a… Read More Take part in a live trial now as part of NIHR’s visit to the British Science Festival #NIHRCOMETtrial
….despite the temptation. Summer means many things for me. One of them is keeping track of the football transfers. Here’s hoping that the Eagles do manage to persuade Ronaldo to South London! The comments that managers make about players never cease to amuse me. One of the most common goes something along the lines of: ‘He’s… Read More Clinician resistance to research may require an arm around the shoulder not a red card
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… Read More A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly
I am involved in this follow-up study to one published a few months ago (and covered on this blog) about the poor information given to patients about the placebo in clinical trials. In the first instance the researchers are looking for people to input into the design of a leaflet. Details and contact email follows:… Read More Help us make sense of the placebo effect…
Healthtalkonline is looking for volunteers to be interviewed about their experiences of patient public involvement in research design and delivery. Flyer with contact details below.
Don’t be put off by the fact that I’m speaking at one of these – my fellow speakers are great! The National Coordinating Centre for Public Engagement has launched registration for a series of specialist workshops targeted at organisations, professionals and members of the public who are passionate about public engagement. These workshops will take… Read More Registration opens for Engage 2012: Responding to Change
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… Read More Patients, David and Sally, talk about their part in the Parkinson’s Monument Discovery Project
The results of the annual cancer patient experience survey are out today. For those of us committed to improving patient access to clinical trials and other research, this year’s report is particularly interesting. As far as I know, this is the first year that the survey asked patients whether taking part in research had been discussed… Read More Cancer patient experience survey results show variations in access to clinical trials and research
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… Read More There is no point to the javelin
Actually that’s not quite true because, as is not uncommon with these things, the evidence session I attended today was more of a discussion, and a very good one it was too. But I did more or less cover the following points. At the end we were asked to express one wish about what happens… Read More My key points to the ‘Caldicott 2’ Review of Information Governance earlier today
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… Read More The NHS Commissioning Board Draft Mandate and patients in health research