patient involvement

Abstract: This article conveys how taking patient knowledge seriously can improve patient experience and further medical science. In clinical contexts related to infection-associated chronic conditions and other complex chronic illnesses, patient knowledge is often undervalued, even when...

"About the Patient-Generated Hypotheses Journal Welcome to the Patient-Led Research Collaborative’s first issue of the Patient-Generated Hypotheses Journal. This issue is a compilation of six hypotheses plus poll results. People with Long COVID and associated conditions and caregivers of...

Project Summary Background: While patients are increasingly engaged in clinical research and clinical registries in an advisory capacity, collaboration and patient leadership in clinical effectiveness research remains limited. Newer patient-led participatory outcomes research for Long COVID-19...

Moved post. This thread collects together several threads on the same topic. Cryptocurrency investors (well, in this case inventor) are contributing more to researching a major health crisis than all medical institutions combined. The UK's NIHR funding was mostly wasted on pet projects and the...

Abstract Background Patient and public involvement can improve study outcomes, but little data have been collected on why this might be. We investigated the impact of the Feasibility and Support to Timely Recruitment for Research (FAST-R) service, made up of trained patients and carers who...

Abstract In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from ‘epistemic injustices’ – that is to their unfair harming as knowers. In exploring and interpreting patient participation discourses within the 2013–2018 Dutch Myalgic...

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...

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...

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

Trish Greenhalgh is professor of primary care health sciences at the University of Oxford. https://blogs.bmj.com/bmj/2019/11/12/trisha-greenhalgh-towards-an-institute-for-patient-led-research/ see also this thread...

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 Treatments - Better Research for Better Healthcare' and is authored by Imogen Evans, Hazel Thornton, Iain Chalmers and Paul Glazziou. I haven't had...

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...

Extract (paragraph breaks added): Increasingly, however, EBM researchers have reached the conclusion that one implementation model does not fit all and that, instead, a series of overlapping implementation strategies best target specific groups. 34 Consequently, a multi-faceted approach to...

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 Year’s pledge is an extension of our commitment to open science and involvement of patients and the public in all stages of the research enterprise...

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...

Medscape: Ignoring Patient Input Tied to Diagnostic Error Patients' views are not often included in records of diagnostic errors, but new data released on November 5 suggest that patient and family narratives may contain key information that should formally be included in the system.

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...

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. It is interesting that this sociologist is unquestioningly buying into the assumption that those with contested illness are not really ill at all...