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 →
Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research
The Nuffield Council on Bioethics have today published their report: 'The collection, linking and use of data in biomedical research and health care: ethical issues' following months of inquiry by an expert working group Chaired by Professor Martin Richards. Here's a copy of the actual report. There is much coverage in the media already including the... Continue Reading →
Cancer research ‘sales’ to patients remain flat
Today sees the annual Cancer Patient Experience Survey published. For the third year running it looks at the extent to which people with cancer are being told about the opportunity to take part in research. Also, how many take up that opportunity. National data is published and then statistics are provided by NHS Trust and... Continue Reading →
Scotland looks to get ahead on involving patients and the public in health research: new strategy
Scotland has arguably lagged behind the other three nations of the UK in embedding public involvement in research. There has undoubtedly been some good work, not least on things like the sharing of patient data issues and clinical trials recruitment (the Scottish Health Research Register SHARE being an innovation of note). But research funders north of the... Continue Reading →
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 →
NIHR announces strategic review of public involvement in research #PPIBreakingboundaries
The following official announcement has just been posted on the NIHR website with links to the terms of reference and initial submission document. I say 'initial' because there will be others ways in which you can contribute to the review over the next few months. I am very excited that NIHR has commissioned this exercise... Continue Reading →
UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
I once wrote an article for a local rag bemoaning the state of the town's railway station. When, two days later, the council announced plans for its complete redevelopment I expressed my shame and guilt to a friend for not having known this. "Simon," he said after a long pause, "it sounds like a simple case... Continue Reading →
