patient engagement

Title pretty much explains it. What information and/or statistics can you suggest that might be useful in interesting people outside of the ME world into ME research? Thought it would make a useful discussion to have. Partly inspired by

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 pwME in their research (in an advisory role or otherwise)"? Thread is partly inspired by this tweet ETA: Ironically, Joan is asking for suggestions...

https://www.healthline.com/health/doctors-listen-to-patients#1

https://blogs.bmj.com/bmj/2019/02/08/hilde-t-myrhaug-and-tone-hansen-co-producing-a-systematic-review-with-patients/ I thought that this was of interest for showing how patients can end up pushing for a more 'positive' presentation of results if they've had a positive experience with a...

Source: ACM CHI Conference on Human Factors in Computing Systems 2019 Date: May 4-9, 2019 URL: https://researchportal.bath.ac.uk/en/publications/patient-perspectives-on-self-management-technologies-for-chronic- Ref: https://chi2019.acm.org Patient perspectives on self-management technologies...

I'm posting this in case there are Cdn advocates here who are not aware of this group and who might find connecting with this group of possible use for ME advocacy: https://www.cma.ca/En/Pages/patient-voice.aspx The CMA Patient Voice is our patient liaison group and is made up of 14...

Interesting feature on a topical issue. It's getting easier for patients that participates in clinical trials to connect online and share experiences and information. But what if that leads to unblinding a trial? Also discusses how difficulties in recruiting patients for clinical trials has led...

The New Age of Patient Autonomy Implications for the Patient-Physician Relationship https://jamanetwork.com/journals/jama/fullarticle/2707954

Paul Wicks, Tessa Richards, Simon Denegri and Fiona Godlee: Patient's roles and rights in research Critical voices, including some patient advocates, have likened current approaches to patient involvement to “virtue signalling.”67 They point to an enterprise which remains skewed to serving the...

This may be done elsewhere on the site, but I thought it would be interesting to see what research patients would like to see. Perhaps if there is enough then we could do some sort of briefing paper with ideas for Chris Ponting.

http://occupyme.net/2018/06/20/public-comment-on-engaging-people-with-me/

Apparently this year is the first time the BMA has debated a motion put forward by the Patient Liason Group. The motion was passed unanimously.

https://www.bmj.com/content/361/bmj.k1463

Read the whole thing at: http://www.occupycfs.com/ It's actually pretty funny! Well worth a read.

I came across this & found it interesting. "So my talk today is not about the importance of patient engagement in research. Rather, I’m interested in a broader, more critical discussion. In addition to asking ‘how do we do it better’, I propose we also need to ask ‘why do we do it at all’ –...

While the UK BPS school seem to push a narrative of vexatious, dangerous patients, other scientists have praised PWME for their support. I thought it would be useful to collect those quotations - not least so that people can tweet them in response to the other narrative - but I can't remember...