You don't have to worry about blinking and missing something in UK research if you are a patient. No. You could probably have a metaphorical afternoon nap. Or whole night's sleep. Perhaps even frozen cyrogenically for a few years. And still be waiting for some things to happen that are in yours and mine interest. … Continue reading Getting research results should be blinkin’ easy for patients. Survey launched by @HRA_Latest
According to the recent national survey of people's experiences of being involved in National Institute for Health Research (NIHR)*, one in five patients, carers and members of the public told us they had been a 'co-applicant' in research. An equivalent number described themselves as being a 'member of a research team.' As a member of … Continue reading New guidance on what it is to be a public co-applicant in research launched by @NIHRINVOLVE @HRA_Latest and @NHSRDForum
White, middle-class and well-connected - and that's just the patients: is this the health research culture we wish to see in the UK? Ever since it was established in 2011, the Health Research Authority (HRA) - the UK regulator of health research whose mission is 'to protect and promote the public interest' - has commissioned … Continue reading New @HRA_Latest @OfficialNIHR data on UK public attitudes to health research highlights need to work with under-represented groups to break down barriers #diversity
There is much post-Brexit talk of using our new-found political independence to liberalise clinical trials in the U.K. We can cut ourselves free of all that terrible EU red-tape that has weighed us down. Or so the argument goes. We can be quicker and more efficient than other countries. We will be more attractive to … Continue reading The post-Brexit liberalisation of #clinicaltrials could be the way to a bolder ambition for the UK
You probably don't need to hear another thing about the EU, do you? (By the way what a terrible EU referendum campaign it is - have you ever heard such hyperb******s from our politicians?) But this really is a good thing. Following the passage of the new EU Clinical Trials Regulation, the European Commission has started … Continue reading EU issues draft guidelines on providing clinical trial results so you and I can understand them #clinicaltrials
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
Today's rare foray onto the UK political scene by Tony Blair reminded me of a simpler time when politicians just used to repeat the same word three times for added emphasis. Or was it the daleks who used to do that? Funny how nightmares and the stuff of dreams can sometimes get confused in this way. Should either … Continue reading Blog: Consent, consent, consent…….new public dialogue report from @HRA_Latest
This is a really interesting study published in PLOS ONE today. Eessentially it's a survey of the attitudes of 2300 participants in TwinsUK (a national biobank) to giving their consent to medical research. The full paper can be found here. The results of the survey would seem to highlight what has been a growing theme in the … Continue reading Consent for medical research comes under scrutiny yet again: time for ethics committees to stop second-guessing the public?
Two posts in one day! Ah, those were the days when we got two Post Office deliveries a day.... Just to say the Government has published the full terms of reference for its Innovative Medicines and MedTech Review to be headed up by Sir Hugh Taylor who is currently Chair of Guy's and St Thomas's. Yes, that's … Continue reading Government pushes forward with review to speed up availability of innovative medicines and treatments
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
The Government has today announced an Innovative Medicines and MedTech Review, beginning in early 2015. The Minister for Life Sciences, George Freeman MP, has set out a bold vision for cutting drastically the time it takes to develop and give patients access to new medicines and innovation. This news release lays out the basic aims … Continue reading Less haste and more speed is better for research and better for patients
The Health Research Authority (HRA) is to be congratulated on its draft guidance to researchers on providing information to participants at the end of the study. The guidance is open for consultation until the end of this month.It takes a common-sense approach to sharing trial results with study participants. I challenge any researcher not to find … Continue reading Health Research Authority (HRA) draft guidance on sharing trial results with research participants and more!
Sciencewise, the Government funded body which aims to improve science and technology policy-making by making better use of public dialogue, is celebrating its tenth birthday this year. Set up in 2004 in the wake of the fiasco that was GM foods, Sciencewise has done much within Whitehall and Westminster to advance the case for a more open, … Continue reading Sciencewise: 10/10 see you again – I sincerely hope so!
Looking at how we can improve the patient experience of being in a clinical trial is something I'll be doing a lot of this year as National Director. It will be one of the objectives of the NIHR strategy to increase research participation that I have just broken off from writing to do this blog. If you … Continue reading Dignity and respect in clinical trials: some thoughts
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.
Invitation to contribute to workshops about the Health Research Authority’s Public Involvement Strategy The Health Research Authority is running two workshops to give people interested in our strategy an opportunity to discuss it and how we put it into action. We would like these to include researchers and research funders as well as patients and … Continue reading An invitation from the Health Research Authority (HRA): #patientsasregulatorypartners
Yep, it is a double whammy from the Health Research Authority (HRA) via me. Earlier I blogged about the HRA's new public involvement strategy. Now I am passing on the following which is self explanatory I think...and I am sure they would welcome your input if you have time. One of the good things about the revised … Continue reading New HRA web guidance on consent and participant info sheets open for review
Now, how does the famous saying go? Some are born regulators, some become regulators, and some have regulation thrust upon them. Yesterday our medical research regulator - the Health Research Authority (HRA) - set out its strategy for public involvement: http://www.hra.nhs.uk/patients-and-the-public-2/how-the-hra-works-with-patients-and-the-public/our-strategy-for-public-involvement/ Regulators are the modern tool by which Governments operationalise law. Years ago it used … Continue reading Health Research Authority makes its pitch to patients and the public
It's no secret that I think the Health Research Authority (HRA) has been doing the right things in the right way since its establishment. Today, a colleague drew my attention to its recently published annual review (see the first of the named publications on its home page). It gives a good account of itself as … Continue reading Health Research Authority (HRA) publishes its first annual review
The public might just be on the verge of getting the sort of health research regulator they need and deserve. Yesterday the Health Research Authority (HRA) published its plans for promoting transparency around publication of health research findings. Of particular note from a public and patient perspective is its proposal to: 'set standards and issue … Continue reading Research transparency: HRA shows a cool head where others fear to tread