Making sure that research funded by the NIHR, charities and industry reflects the needs and priorities of patients, carers and the public is one of the most important agendas in public involvement. It has been a focus for much activity over the years with the outstanding James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) being the … Continue reading NIHR revamps another route for patients, carers and the public to submit their ideas for research
James Lind Alliance
What next in identifying patient priorities for health research? #JLAevaluation
I spent yesterday morning at an excellent event looking at the James Lind Alliance Priority Setting Partnerships (JLA PSPs for short!). #JLAevaluation Started in 2004, JLA PSPs have become a recognised and highly respected method for identifying shared priorities in health research among patients, carers and clinicians. That they have is a testament to its founders but also the excellent JLA … Continue reading What next in identifying patient priorities for health research? #JLAevaluation
NIHR turns to public for help with defining research priorities in alcohol-related liver disease
This content is straight from the NIHR but I feel so deeply about this issue that I wanted to use my blog to highlight what is clearly a very important initiative. But here's a factoid about Priority-Setting Partnerships that's worth sharing as a presage to the piece: 29 PSPs have now been completed since the beginning … Continue reading NIHR turns to public for help with defining research priorities in alcohol-related liver disease
NIHR looks to go PROACTIVE with plan for research participation and engagement
Why shouldn't you and I be able to take part in appropriate and relevant research as part of our NHS care and treatment? Why shouldn't we be able to expect to have that discussion with our doctor as part of our diagnosis and care? Why shouldn't we be able to access research evidence so we … Continue reading NIHR looks to go PROACTIVE with plan for research participation and engagement
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
Parkinson’s UK asks those affected by the disease to identify the top 10 unanswered research questions
Parkinson's UK is an excellent organisation. It is arguably an exemplar for other charities looking to involve patients and the public in medical research. This week, together with the indefatigable James Lind Alliance, it set about the task of asking people affected by Parkinson's - those with the disease, carers, family members, health and social care professionals etc., - … Continue reading Parkinson’s UK asks those affected by the disease to identify the top 10 unanswered research questions
Research is for life: making research part and parcel of the patient journey
I was very privileged to be asked to give the Furlong Christmas Lecture a few weeks ago. I hope this doesn't seem egotistical but here's the text of that lecture amended with useful links etc - it touches on and rehearses themes that will be familiar to those of you who have visited the blog … Continue reading Research is for life: making research part and parcel of the patient journey
Supertrams, supertramp and day-glo…plus JLA (no, not JLS!) go to number one
I don't know about you but I've taken to asking for a 'double-dip' lottery ticket since yesterday's Autumn Statement. Never has so much hinged on four new trams in Sheffield, who would have thought? But as soft rock band Supertramp famously said in "Put On Your Old Brown Shoes": ''We've got to get away, get … Continue reading Supertrams, supertramp and day-glo…plus JLA (no, not JLS!) go to number one
Democratising research
So I thought you might be interested in my thoughts on innovation and public involvement that I shared with the audience at the PatientsParticipate! conference at the British Library on Friday afternoon. The real star of the show thought was patient advocate, Graham Steele, who gave us an absorbing tour of social media and public … Continue reading Democratising research
Simon Denegri's Lay Review 