When I was growing up I used to help my Dad do DIY around the house. Our perennial companion was a thick, hard-bound manual with step-by-step guides on how to do anything and everything. No job was too big or too small for it. From replacing a chimney stack to changing a plug. Dad passed … Continue reading The devil’s in the manual – health research regulation and public involvement @HRA_Latest
patient and public involvement
Public engagement in research must break through its rose-tinted glass ceiling #engage_2015
On Wednesday a consortium of 15 research funders and Universities UK led by the Wellcome Trust published its report 'Factors affecting public engagement by researchers.' The Wellcome Trust launch website is here and the report itself can be found here. It's an important piece of work; a 'state of the nation' commentary on public engagement activity across … Continue reading Public engagement in research must break through its rose-tinted glass ceiling #engage_2015
There is indeed method in our ‘madness’ – being METHODICAL about public involvement
Polonius: [Aside] Though this be madness, yet there is method in't. Hamlet Act 2, scene 2, 193–206 If you are in some way connected to public involvement in health research then you get used to 'the look.' Sometimes it's a vacant stare or a gaze falling slowly across the face like the sun going down. In other instances … Continue reading There is indeed method in our ‘madness’ – being METHODICAL about public involvement
Babraham Institute pins down public attitudes to basic science
Public dialogue exercises can come across a bit like the public engagement version of a 'lock-in.' They are undoubtedly enjoyable - for all concerned including the participants. However, there can be a feeling that people are being force-fed information until they recant their ways! That said, this tool (of choice, for many) is a useful way of exploring people's views on issues in-depth and over … Continue reading Babraham Institute pins down public attitudes to basic science
Who are the good, the bad and the ugly at involving the public in medical research? New comparative figures for Government, charities and industry
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 ethics … Continue reading Who are the good, the bad and the ugly at involving the public in medical research? New comparative figures for Government, charities and industry
Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research
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 … Continue reading Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research
MRC publishes new communications and engagement strategy (plus new film!)
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 … Continue reading MRC publishes new communications and engagement strategy (plus new film!)
Scotland looks to get ahead on involving patients and the public in health research: new strategy
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 the … Continue reading Scotland looks to get ahead on involving patients and the public in health research: new strategy
Patients hack medical research in planned attack
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 … Continue reading Patients hack medical research in planned attack
Health Research Authority looks for good practice in identifying research participants – survey.
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 … Continue reading Health Research Authority looks for good practice in identifying research participants – survey.
Young people in research have sent me a postcard, have a look….
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 … Continue reading Young people in research have sent me a postcard, have a look….
Big data, big stage, cue patients as the leading actor. Remarks at #bigdata2013 on the patient agenda
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 … Continue reading Big data, big stage, cue patients as the leading actor. Remarks at #bigdata2013 on the patient agenda
NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report published
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
Take part in a live trial now as part of NIHR’s visit to the British Science Festival #NIHRCOMETtrial
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 … Continue reading Take part in a live trial now as part of NIHR’s visit to the British Science Festival #NIHRCOMETtrial
Clinician resistance to research may require an arm around the shoulder not a red card
....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 … Continue reading Clinician resistance to research may require an arm around the shoulder not a red card
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 A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly
Help us make sense of the placebo effect…
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: … Continue reading Help us make sense of the placebo effect…
Healthtalkonline looking for people to talk about their experiences of patient and public involvement
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.
Registration opens for Engage 2012: Responding to Change
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 … Continue reading Registration opens for Engage 2012: Responding to Change
Patients, David and Sally, talk about their part in the Parkinson’s Monument Discovery Project
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
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