So the Royal Society has appointed Professor Brian Cox as its new Professor for Public Engagement in Science at the University of Manchester. The physicist who is becoming increasingly eponymous with science on TV in the same way that the broadcaster and naturalist, David Attenbrough, has with wildlife programmes, or Janett Street-Porter became associated with youth programming in the … Continue reading An aside on the Royal Society’s life with Brian and Coxing science through the election
On my travels so a cut and paste of a news release about an exciting new project. Those who know Y Touring will also be pleased to hear that it has found a loving home at last. New theatre company: Theatre of Debate Ltd. announces inaugural project Press Release: 13 November 2014 The creation of … Continue reading Public involvement in research to be turned into drama in groundbreaking new play
A little while ago someone suggested that I write something about my approach to lay reviewing in health research. Not so much a 'how to' guide as there are lots of these and very good they are too. More, an insight into the questions I ask myself when forming an opinion on an application for … Continue reading The art of lay reviewing in health research: some pointers
Yesterday INVOLVE hosted a meeting of about 100 public involvement leads from across the National Institute for Health Research (NIHR). There are probably nearer 200 in total across the NIHR family.This was the first time that we have ever been able to bring together people in this way. A powerful milestone.This link will take you … Continue reading What have people told us about public involvement in research?
The review panel conducting the NIHR strategic review of public involvement in research meets this coming Monday. So, I thought you might be interested in a very brief update on where we are, and what I expect to happen next.The deadline for providing views and opinions in response to the review's initial call has now … Continue reading Unofficial update on NIHR’s strategic review of public involvement in research (with thanks to @CLAHRC_NWL)
This has got a bit lost in the hurly burly of the last few days. It is important that it does not remain so. The National Institute for Health Research (NIHR) Senior Investigators - of which there are around 200 I believe - are the very best of the very best researchers across the organisation. NIHR … Continue reading Top NIHR researchers speak out about importance of public involvement in research
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
The massive restructuring of UK clinical research according to new, local boundaries is a regular topic on this blog. My recent post about whether research was ready for the new localism prompted quite a response. I doubted then the willingness of new organisations in this transformation to involve the patient voice. The associated engineering works to … Continue reading Blog: Local leadership in public involvement in research shows the way
There's a big push on #patientdata at the moment. Leaflets explaining how patient data will be shared in the future are being stuffed through people's letter boxes. This is part of an initiative called 'care.data.' Medical research charities have meanwhile funded a national newspaper advertising campaign exhorting the benefits of sharing patient data for research. The … Continue reading Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’
It's going to be a 'big-ish' month in the EU for clinical trials. By most accounts, EU legislators will reach a compromise agreement on the proposed new Clinical Trials Regulation in time for Christmas. The key focus for industry bodies is around making sure the legislation embraces aggressive timelines for the approval of clinical trials. Remind me, isn't … Continue reading Big month in Brussels for clinical trials…but let’s not be hasty
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
Patient and public advocates in health and social care would make bloody good pilots. Year after year we ask them to help successfully land projects and initiatives in 'fuel critical' situations. They are having to carry more, and further. But for how much longer before someone has to declare a real fuel emergency? And a … Continue reading We are in danger of running public involvement in health on Ryanair principles
I'm always very chuffed when people ask for a copy of my presentations after a talk. Usually I am quite good at emailing them to people or asking the organisers to send them round. Anyway, I have done a lot of meetings lately and thought I would post here copies of my slides from the … Continue reading @SDenegri presentations about the public and health research from Leicester, HSRN and Leeds
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?
NIHR Journals Library Launch 20th June 2013 As promised here's my speaking notes from the launch of the NIHR Journals Library today. Good to see the Minister, Earl Howe, there (I tweeted his remarks earlier) plus the CMO, Professor Dame Sally Davies, Trish Edwards, Asst Editor from the BMJ etc., Public involvement in UK health research … Continue reading Blog: Why the NIHR Journals Library is important from a patient perspective
The Cystic Fibrosis (CF) Trust launched its new five-year research strategy in London yesterday. I have to say I am highly impressed. In terms of content and dissemination they seem to have single-handedly shown the rest of the medical research charity sector how to embrace the future as a funder and a patient group. Why is it … Continue reading Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy
Longitudinal studies (in other words, research that follows a population group over a long period of time) would seem to naturally lend themselves to public engagement and the building of strong relationships with the population concerned. The number of these studies being conducted is increasing as is the amount of investment in them, so they … Continue reading The long and cohort of it: missing public engagement opps from birth
Yes, it truly does seem as though Friday should be dubbed 'NIHR Friday' given the propensity for my erstwhile colleagues to push info out on the aforementioned day. The clutch of interesting announcements this week include: Publication of the NIHR Annual Report for 2011-2012. You know, I'm sorry if this offends some people but I'm … Continue reading It’s NIHR Friday inc. new publications, a competition and NIHR CCF makes the Grade with patients
Rather than just tweet this as a link, I thought some background was needed. This is a ten minute extract of a much longer interview I did with Professor Sally Davies, Chief Medical Officer and Chief Scientific Officer at the Department of Health. The interview came at the beginning of a two-day NIHR training camp … Continue reading Prof Dame Sally Davies (CMO) talks about science communications, the media and public involvement
Public involvement in research: would you like that shaken or stirred? So, ladies and gentlemen, there I was on Saturday afternoon, at the pictures, watching the new James Bond movie, ‘Skyfall.’ This was background research for today you understand; listening to Adele dolefully sing: ‘This is the end’ which is the opening line of the … Continue reading Text of speech to INVOLVE 2012 – Public involvement in research: would you like that shaken or stirred?