Project Summary Background: While patients are increasingly engaged in clinical research and clinical registries in an advisory capacity,...
Moved post. This thread collects together several threads on the same topic. Cryptocurrency investors (well, in this case inventor) are...
Abstract Background Patient and public involvement can improve study outcomes, but little data have been collected on why this might be. We...
Abstract In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from ‘epistemic...
Advocacy work can involve surveys - online/ telephone/ hard copy. Much of the time, those who are most severly affected can find it difficult to...
From previous threads ( particularly the paediatric NICE guidelines consultation and problems with conversation), there was interesting discussion...
What big research questions do people with M.E., their carers and clinicians want answered? You are invited to a free workshop on Tuesday 10...
Patient involvement in research—a brief history There is a well-described mismatch between the research that is done on a particular condition...
I was recently sent a free book from NIHR as a 'thank you' for the past work I had done for them as a patient rep. The book is entitled, 'Testing...
Title pretty much explains it. What information and/or statistics can you suggest that might be useful in interesting people outside of the ME...
Title pretty much says it all, or perhaps another way of asking the question is "What would be the ideal way that researchers could accommodate...
Extract (paragraph breaks added): Increasingly, however, EBM researchers have reached the conclusion that one implementation model does not fit...
I thought the last paragraph here was interesting. BMJ: Elizabeth Loder, head of research - Pledges for the new year As for The BMJ, our New...
Interesting feature on a topical issue. It's getting easier for patients that participates in clinical trials to connect online and share...
Medscape: Ignoring Patient Input Tied to Diagnostic Error Patients' views are not often included in records of diagnostic errors, but new data...
Paul Wicks, Tessa Richards, Simon Denegri and Fiona Godlee: Patient's roles and rights in research Critical voices, including some patient...
One for those who enjoy being wound up by this stuff. The main example they discuss is fibro, not ME, but that's unlikely to reduce your outrage....
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