This week saw a great editorial by Angela Coulter in the British Medical Journal (BMJ) headlined ‘Measuring what matters to patients.’ The underlying story may be summed up as follows. The effectiveness of the care or medicines you and I receive every day has been decided by measuring the things that health professionals and researchers have decided are important. Some of these ‘measures’… Read More When patients help bridge the knowledge gap in health research #clinicaltrials #whywedoresearch #PROMs
The UK National Institute for Health Research (NIHR) has launched a striking new poster campaign entitled #twosides to raise awareness of the importance of patients and the public to making health and social care research happen. There are three posters to choose from in the series and you can download or order posters here. These… Read More NIHR launches new poster campaign on public involvement in research #twosides @OfficialNIHR @NIHRINVOLVE
It’s not just the borders of Mexico where Donald Trump is building walls. A fence is going up around science too. In his first few weeks in office the US President and his White House staff imposed a media black out on the federal Government funded Environmental Protection Agency (EPA), put a freeze on new… Read More Trump is coming between good science and its citizens. We – the public – must not let it happen.
This blog by me was first published on the National Institute for Health Research (NIHR) prior to Christmas to coincide with the publication of the James Lind Alliance Priority Setting Partnership on alcohol-related liver disease. But yesterday’s report by Public Health Wales showing that thousands of people who die from alcohol related problems had no… Read More Let’s follow #DryJanuary with a concerted effort to research patient priorities in alcohol-related liver disease @LindAlliance
If you follow me on Twitter (@SDenegri) you might notice that I regularly RT the work of the McPin Foundation which exists to ‘transform mental health research by putting the lived experience of people affected by mental health problems at the heart of research methods and the research agenda.’ It’s a fabulous organisation. Prior to Christmas they… Read More Blog: some mental health research items inc. a new young person’s group being formed @McPinFoundation
If you have read my last two blogs – and if you have, thank you – then you will know I have been sharing some of my family’s experiences of health and social care over the last six months. Now that my father is home following his stroke we have entered a whole new chapter… Read More Prevaricare is a new care service coming to you very soon. But don’t wait in.
Fighting is for fundraisers I won’t be the first or the last person to remark on the misappropriation of fighting talk when discussing ill-health. We don’t ‘fight’ cancer, dementia, the aftermath of a stroke or mental I’ll-health. No, what we actually do is fight all the things around it. We fight to get to see… Read More ‘Risk is in the eye of the beholder’ and other patient stories not to be swatted