patient engagement

There are an estimated 250,000 PwME in the UK, not counting the influx from Covid, and yet only about 20,000 joined DecodeME (a low-effort, patient-friendly, crucial study), our two main charities probably have a total of about only about 10,000 members/supporters (the MEA has 5,000 so I'm...

Interesting video with lots of overlap with us, although some of it is the exact opposite. I have been noticing that, generally speaking, things are just as dysfunctional in autism research in terms of conflict between perception and reality. It's the exact same story of not listening to...

Abstract As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to “meaningful and active collaboration in governance, priority setting, conducting...

Full title: How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community Abstract Background There is now rising consensus that community engagement is ethically and scientifically essential for...

How do Health Service (NHS) organisations respond to patient concerns? A qualitative interview study of the Patient Advice and Liaison Service (PALS) Abstract Objectives To describe the current work of the Patient Advice and Liaison Service (PALS) and assess the service’s potential to resolve...

I recently followed an online webinar about patient involvement in the Dutch ME/CFS program. It looks like the idea is to involve patients in as many aspects of the research project as possible, which is a great initiative. If I recall correctly, ME/CFS patients were already involved in...

https://blogs.bmj.com/bmj/2021/09/20/to-speed-progress-in-treating-chronic-conditions-engage-patients-and-caregivers-as-research-partners/

For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects Publicly funded research aims to benefit patients and the best way to make sure it does is for researchers and funders to partner with patients. This will ensure research...

M.E. In BC [British Columbia]: How the healthcare system for M.E. impacts clinicians and patients This is a preliminary study assessing the unmet needs of patients living with ME; 25 patients were either interviewed or participated in a focus group. Over 170 health care professionals/...

Advocacy work can involve surveys - online/ telephone/ hard copy. Much of the time, those who are most severly affected can find it difficult to engage with this unless a fanily member/ carer can assist them- some may struggle to have this assistance. The PLP will feature a survey and there are...

doi:10.1136/ebmental-2019-300133 Sci-Hub Alice Davis, Theresa Smith, Jenny Talbot, Chris Eldridge, David Betts ABSTRACT Background Across England, 12% of all improving access to psychological therapy (IAPT) appointments are missed, and on average around 40% of first appointments are not...

https://bpspsychub.onlinelibrary.wiley.com/doi/10.1111/bjhp.12475 (only mentions 'chronic fatigue' but also LTC (long term conditions) and MUS) eta: All authors declare no conflict of interest.

Anybody want to help spread the Cochrane gospel? https://www.evidentlycochrane.net/cochrane-uk-consumer-champions/

From previous threads ( particularly the paediatric NICE guidelines consultation and problems with conversation), there was interesting discussion about the ability of #pwme to participate in consultation. The existing go-to seems to be online survey, with telephone being a back up and this was...

http://www.meresearch.org.uk/our-research/living-with-severe-me/

https://www.eventbee.com/v/free-research-workshop/event?eid=119084524

https://blogs.bmj.com/bmj/2019/12/17/dear-father-christmas-the-bmj-patient-advisory-panels-wish-list/

This was highlighted in the December Invest in ME newsletter. https://www.surveymonkey.com/r/87GSGGY

Likely followed by a talk on vaccine safety by Andrew Wakefield and a panel on the scientific method sponsored by Goop.com and NaturalNews. The talk is the pros and cons so I guess it's worthwhile debate to involve people smearing, bullying and insulting patients trying to engage with health...

So, for those of you who aren't aware, I have been fortunate enough to be invited along to take part in these meetings as a patient representative. A brief overview of Dr Morten can be found here, https://www.wrh.ox.ac.uk/team/karl-morten, and his MEpedia page is...