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 →

Blog: Local leadership in public involvement in research shows the way

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 →

Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’

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 →

Big month in Brussels for clinical trials…but let’s not be hasty

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 →

An invitation from the Health Research Authority (HRA): #patientsasregulatorypartners

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 →

We are in danger of running public involvement in health on Ryanair principles

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 →

It’s NIHR Friday – Public involvement: did the research network move for you?

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 →

Blog: Why the NIHR Journals Library is important from a patient perspective

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 →

Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy

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 →

It’s NIHR Friday inc. new publications, a competition and NIHR CCF makes the Grade with patients

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 →

Prof Dame Sally Davies (CMO) talks about science communications, the media and public involvement

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 →

Text of speech to INVOLVE 2012 – Public involvement in research: would you like that shaken or stirred?

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 →

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