The most memorable sentence from this one-day workshop held at Jesus College, Oxford, on 21 June 2018 was from keynote speaker Mark Taylor. Reflecting on his experience as a patient with multiple sclerosis, he said: “I am old enough to have lived through two NICE guidelines on my condition. Neither of them was relevant to me.” Mark’s comment illustrated one of the central challenges of what has become known as the ‘impact agenda’ in healthcare research.
Patient Involvement Blog
News and views about patient involvement
BRC PPI leads shared learning event – 6th September 2017
Following on from a successful first gathering at the end of May of PPI leads from Biomedical Research Centres (BRCs), Clinical Research Facilities (CRFs) and Patient Safety Translational Research Centres, the Oxford BRC and Oxford Health BRC hosted a second, smaller event on 6th September. Supported by the Central Commissioning Facility (CCF) and INVOLVE, this … Read more
Involvement in health research
We are really pleased to have a guest blog from one of the members of Patients Active in Research (PAIR). Fraser Old tells his patient and public involvement (PPI) story below. “Despite a life-long leisure interest in sailing, it took my wife’s arthritis to bring about an acquaintance with the 18th century naval surgeon, James … Read more
Trials and tribulations
The turn of the year is always a time for reflection as well as resolutions for what lies ahead. I was recently heartened by a colleague’s praise of our Patient and Public Involvement Working Group’s efforts to promote openness and transparency around clinical trials, and delighted when Nature invited us to comment on their recent … Read more
Patients and researchers unite
Since we launched www.patientsactiveinresearch.org.uk almost two years ago, it’s been good to see a steady stream of researchers posting their patient and public involvement (PPI) opportunities there, and a growing number of patients and members of the public signing up to get involved. The latest monthly stats show 441 users visited the site in November, … Read more
Identifying research priorities together: does it make a difference?
Guest blog by Sandra Regan, Patient Involvement and James Lind Alliance Project Manager, NIHR Oxford Biomedical Research Centre (BRC) This time last year, Sophie Petit-Zeman wrote a blog about how best to ensure that our James Lind Alliance (JLA) priority setting partnerships (PSPs) really do make a difference to what research is done. “The last … Read more
Who are the experts?
One of the central debates in patient and public involvement (PPI) is about how best to mix the activities of those seeking to understand the causes of and cures for ill health with the vast and varied experiences of those who have been or are unwell. Indeed, it is tackling this challenge within the (vast … Read more
Good news and gauntlets
The first email came in on Wednesday at 0.04, from the BRC Director: our BRC has been awarded new funding of almost £114m over the next 5 years. In parallel, the Oxford Health BRC gets £12.8m to support research into mental health and dementia. The total NIHR award to Oxford thus stands at £126m – … Read more
What can the JLA do for you?
I have written often on this blog about our James Lind Alliance (JLA) work, which uses a structured process to enable research priorities to be set by patients, carers and care professionals, rather than by pure researchers who may never see patients, or the drug industry. And I had been thinking it was time for … Read more
And the winner is……
I last wrote on this blog about our patient and public involvement (PPI) play in January, so haven’t had the chance to share the reviews written by Simon Denegri, NIHR National Director for Patients and the Public in Research and theatre critic Susan Elkin. We now have another review to share, as we are delighted … Read more
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