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Bex

@rebeccajpw.bsky.social
378 followers 670 following 104 posts

#PalliativeCare, #experience-based co-design, #ebcd, #QualitativeResearch, assistant prof @JHSON, interested in people and how we can best care for them. Londoner on the loose.

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Picker @pickereurope.bsky.social · 26/01/2026
Develop your co-design skills through our highly regarded Experience-Based Co-Design course, alongside change-makers from across the health and care sector. bit.ly/PickerEBCD #Training #CoDesign #QualityImprovement #HealthcareResearch #EBCD #ExperiencedBasedCoDesign
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Prof. Virginia Braun (she/her they/them) @ginnybraun.bsky.social · 23/12/2025
Now published… We Reject the Use of Generative Artificial Intelligence for Reflexive Qualitative Research - Tanisha Jowsey, Virginia Braun, Victoria Clarke, Deborah Lupton, Michelle Fine, 2025 journals.sagepub.com/doi/10.1177/...
journals.sagepub.com
We Reject the Use of Generative Artificial Intelligence for Reflexive Qualitative Research - Tanisha Jowsey, Virginia Braun, Victoria Clarke, Deborah Lupton, Michelle Fine, 2025
Four hundred and nineteen experienced qualitative researchers from 32 countries invite readers of Qualitative Inquiry to consider their position on use of gener...
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Brent Toderian @brenttoderian.bsky.social · 06/03/2025
“In Finland, the number of homeless people has fallen sharply. Those affected receive a small apartment & counselling with no preconditions. 4 out of 5 people affected make their way back into a stable life. And all this is CHEAPER than accepting homelessness.”
thebetter.news
Finland ends homelessness and provides shelter for all in need - scoop.me
In Finland, the number of homeless people has fallen sharply. Why? The country applies the "Housing First" concept agains homelessness.
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Prof Erica Borgstrom @ericaborgstrom.bsky.social · 26/02/2025
ICYMI - Article in @theconversation.com Death doulas: helping people at the end of their life theconversation.com/death-doulas...
theconversation.com
Death doulas: helping people at the end of their life
There is a growing demand for people who help the terminally ill have a good death.
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Gemma Allen (she/her) @gemmaallen.bsky.social · 11/02/2025
It was fabulous to be a co-applicant on The Victoria & Stuart Project and even more so to see our overview paper published! ➡️ onlinelibrary.wiley.com/doi/10.1111/... #research #palliativecare #learningdisabilities #hpm
onlinelibrary.wiley.com
Co‐Designing a Toolkit of Approaches and Resources for End‐of‐Life Care Planning With People With Intellectual Disabilities Within Adult Social Care Settings: A Multi‐Phase Study
Background People with intellectual disabilities are rarely involved in end-of-life decisions. This study investigated and further developed approaches and resources to enable inclusive end-of-life ...
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Erika Hall @erikahall.bsky.social · 10/02/2025
I heard you like critical thinking. Come hang out February 20th and learn how to encourage it in any organization that's not actively opposed. Evidence-based decision-making is possible! www.eventbrite.com/e/lets-do-de...
eventbrite.com
Let's Do Design Research Right!
A 3-hour workshop that compels you to rethink your approach to design research, ensuring you are more effective and influential.
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Pall Bro @pallbro.bsky.social · 07/02/2025
Your end of life patient now has terminal delirium. I hope it’s not because you applied a scopolamine patch, but even if you did, not to worry, there’s a very easy approach.
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Jessica Cale @dirtysexyhistory.bsky.social · 31/01/2025
Given all these critical webpages are being taken down, this might be a good time to familiarize yourself with the Wayback Machine on Internet Archive. It can pull up pages that are no longer active: web.archive.org
web.archive.org
Wayback MachineHamburger iconInternet Archive logoWeb iconTexts iconVideo iconAudio iconSoftware iconImages iconDonate iconEllipses iconDonate iconUser iconUpload iconSearch iconSearch iconSearch icon...
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Bex @rebeccajpw.bsky.social · 24/01/2025
Great news paper, well worth a read, likely a very useful citation when justifying qualitative methods in grants as well as papers.
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Meng-meng Fu @mengmengfu.bsky.social · 24/01/2025
If you’re a federal govt employee targeted for leave or termination on the basis of your DEI work, please file an EEO (Equal Employment Opportunity) complaint & retain legal counsel. I’m a former NIH PI. Happy to refer you to a law firm that has successfully sued the govt many times! Pls repost 🙏❤️
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Jo Wolff @jowolff.bsky.social · 06/01/2025
No don’t want the ‘Pro’ version of the computer, I want the ‘Amateur’, which doesn’t hide commands in obscure places, doesn’t want to keep updating everything all the time, and is on good speaking terms with the printer.
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Rob Arnol @robertarnol.bsky.social · 20/12/2024
Recognition in the form of a Gisèle Pelicot Medal for the betterment of Womankind, with an attached monetary stipend similar to a Nobel Prize to be awarded yearly to a deserving woman is the least that could be done. Some years there will be a need for multiple medals unfortunately.
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Very British Problems @soverybritish.bsky.social · 20/12/2024
Some things a Brit might say to visitors when they want them to go. From the new book: Britain According to Very British Problems. shorturl.at/j9gYd
• 'Anyway, don't let me keep you?'
• 'I'll let you get on?'
• 'Right. < slap their own thigh>
• 'Gosh, is that the time?'
• 'Goodness me, it's getting a bit dark now, isn't it?'
• 'What time's your train?'
• 'Well it's been lovely to see you?'
• 'What are you doing for the rest of the day?'
• 'Did you want another cup of tea?' ‹ please say no!>
• 'I should imagine you want to beat the traffic.'
• 'I don't like the thought of you driving in the dark?
• 'What are you having for dinner?'
• 'I can't remember, did you bring a coat?'
• 'Do you want a hand putting things in the car?'
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Bex @rebeccajpw.bsky.social · 21/12/2024
A problem with being dyslexic and of the spectrum, which also though makes life funnier, is not always seeing what others do. First time I saw someone write 'OOO' in an email for 'out of office' I thought they were pretending to be a ghost for kicks and giggles. 👻
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Just Jack @just-jack-1.bsky.social · 19/12/2024
People who've never been dependent on a paycheck should not get to decide how long you can go without yours.
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Chris Nelder @chrisnelder.bsky.social · 19/12/2024
I can hardly think of a better example of the moral decay in modern health care than a Goldman analyst noting that biotech cures for diseases like hepatitis are cool and all, until their success diminishes the business opportunity for pharmaceutical manufacturers. www.cnbc.com/2018/04/11/g...
cnbc.com
Goldman Sachs asks in biotech research report: 'Is curing patients a sustainable business model?'
Goldman Sachs warns sales from the most successful disease treatments are difficult to maintain.
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Bex @rebeccajpw.bsky.social · 17/12/2024
New word I'd like to coin: 'Frolleague' Definition: colleagues who become friends. @susiedent.com @academic-chatter.bsky.social #academia #chums
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Secret Agent Number Six @designationsix.bsky.social · 15/12/2024
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Lakota Man 🪶 @lakotaman.bsky.social · 13/12/2024
Who here agrees?
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Bex @rebeccajpw.bsky.social · 13/12/2024
Proper chuffed to get this paper out. @ginnybraun.bsky.social @vicclarke.bsky.social per my last post, I really hope we done you proud with this application of #RTA to #EBCD, would love (and slightly fear) your thoughts if you have time to read 😁 #qualitative doi.org/10.1177/1049...
doi.org
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
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Catherine Walshe @catherinewalshe.bsky.social · 05/12/2024
#hpm #hapc #palliativecare #blackburn
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Neil Renic @ncrenic.bsky.social · 04/12/2024
Two stages of writing: 1) This shouldn't take too long 2) Oh no
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Dr Natasha Mary Bradley @natashabradley.bsky.social · 03/12/2024
There used to be an assumption that research participation is burdensome to palliative care patients. This is changing now. Altruism, legacy, and being heard - these can all be meaningful, even at the very end of life (see quote!) Reflecting on lessons from hospice research nurses at #HospiceUKConf
"Sign me up to anything! If it makes a difference to someone else's life, I'm in!" - Hospice patient
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Very British Problems @soverybritish.bsky.social · 30/11/2024
“Say again” - I wasn’t listening “Pardon?” - I didn’t hear you “Eh?” - What are you on about? “You what?” - What the hell are you on about? “What did you just say?” - I might have to fight you “I beg your pardon” - I might have to challenge you to a duel
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Dr Rachel Clarke @drrachelclarke.com · 30/11/2024
Thanks @lbc.co.uk for having me on to discuss AD. Both Keir Starmer & Wes Streeting know full well how grossly underfunded UK palliative care is - & they have the power to change that. But will they? Or will they turn their backs on dying people? www.lbc.co.uk/news/palliat...
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Dr Rachel Clarke @drrachelclarke.com · 30/11/2024
My direct appeal to @rthonwesstreeting.bsky.social & Keir_Starmer in the light of yesterday's vote on AD. If they sincerely care about dying people, surely now they will publicly & urgently commit to properly funding our threadbare, neglected palliative care? www.theguardian.com/society/2024...
theguardian.com
Good palliative care can alleviate the pain of dying – this bill means Labour must fund it | Rachel Clarke
Making dying easier is not the solution when NHS, social and palliative care are simply not there for patients
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Bex @rebeccajpw.bsky.social · 26/11/2024
Cannot figure out how to make a thread, but a thread could be a flutter, while a single post could be a flap!
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Bex @rebeccajpw.bsky.social · 26/11/2024
Is there a #bluesky language or acronym starter pack? I keep wanting to say tweet, and saying post feels so mournful. Open to ideas also! I like the butterfly thing. A group of butterflies is a kaleidoscope swarm or rabble, that could be what lists are called, depending on the list! @bsky.app
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Anne Finucane @annefinucane.bsky.social · 26/11/2024
*NEW* estimates of palliative care need in the UK: 2017-2021. bmcpalliatcare.biomedcentral.com/articles/10....
bmcpalliatcare.biomedcentral.com
Estimates of population-level palliative care need in the UK: a descriptive analysis of mortality data before and during the COVID-19 pandemic - BMC Palliative Care
Background Existing estimates of palliative care need in the UK were produced before the COVID-19 pandemic. We sought to produce updated, population-level estimates of palliative care need for each of...
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Susie Dent @susiedentwords.bsky.social · 26/11/2024
Word of the day is ‘sequaciousness’ (16th century): the slavish and reckless following of another person in matters of thought or opinion.
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Bex @rebeccajpw.bsky.social · 26/11/2024
So needed. Im not from an academic background and have stumbled my way through with occasional and incredible mentors. Add in dyslexia, autusm etc. it can be a lonely & baffling place. Appreciate @felicityenders.bsky.social for her wisdom & generous sharing of info! Will definitely be passing it on!
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Bex @rebeccajpw.bsky.social · 25/11/2024
I know #AI can be useful, but 1 reason for my hesitance is that I learn so much from actually doing the processes myself, whatever the process. Sometimes new concepts, about new people, maybe just patience. But I think the process can be as valuable as the outcome, especially in #academia & #health
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Bex @rebeccajpw.bsky.social · 25/11/2024
If, in a high stakes situation, one discovers there is a leak AND a mole, and they turn out to be the same person, does that mean one has a leaky mole?
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Bex @rebeccajpw.bsky.social · 24/11/2024
In light of connecting with a load of absolutely lovely people in the past few days, I wanted to reshare my paper (just published) on #demographic reporting patterns and their use in interpretation of data in #RCTs in #PalliativeCare. Let me know if you can't access the paper! #hpc #eolc
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Bex @rebeccajpw.bsky.social · 24/11/2024
Well this is incredibly helpful! #grant #review #academia #advice
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Bex @rebeccajpw.bsky.social · 24/11/2024
Has anyone made a list of all of the #Taskmaster contestants who are on @bsky.app ? Id love a chat they were all in.
media.tenor.com
a blurry picture of a man peeking through a doorway
ALT: a blurry picture of a man peeking through a doorway
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Kelly @broadwaybabyto.bsky.social · 24/11/2024
Being disabled and chronically ill is beyond lonely. Far too many people in society can’t comprehend illnesses which are permanent & unrelenting but don’t necessarily kill you. As a result they EXPECT you to get better. When you don’t - they abandon you. 🧵/1
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Bex @rebeccajpw.bsky.social · 24/11/2024
100%, and from personal experience, the indignity of strangers demanding justification & intimate details of your #disability if you have a #ServiceDog.
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Bex @rebeccajpw.bsky.social · 24/11/2024
Just realised that as a #British human, if I got duel #citizenship in #America, I'd become American-ish...
media.tenor.com
a man with a mustache is smiling and says " giggles "
ALT: a man with a mustache is smiling and says " giggles "
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Bex @rebeccajpw.bsky.social · 24/11/2024
The UK debate on assisted dying would likely be different if it the govt would include an emphasis on a greater investment in compassionate living, #PalliativeCare services and access, & framing using Dame Cicely Saunder's 'you matter bc you are you, & you never stop mattering' ethos. #hpm #eolc
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Daniel Nuzum @danielnuzum.bsky.social · 24/11/2024
Listening to the debates on assisted dying… there is so much more we need to do to communicate about the complexities of pain beyond the purely ‘physical and medication’. In #palliativecare we know how complex and multidimensional pain is
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Prof Katherine Sleeman @katherinesleeman.bsky.social · 24/11/2024
People often ask why those working in palliative care are on the whole opposed to assisted dying legalisation. I think this article helps explain it (indirectly). Plus, lovely quote from a family member “They should move away from calling it a hospice. It’s a wellness centre.” t.co/7fUmKxrhoH
t.co
https://www.thetimes.com/uk/healthcare/article/hospice-care-assisted-dying-alternative-mnbsvv6m2
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Dr Rachel Clarke @drrachelclarke.com · 23/11/2024
Fund PC properly. Everyone who cares about alleviating suffering can surely agree on that? But do it first - because otherwise people will ‘choose’ to die because we didn’t give them the care that might have made their life worth living. And that’s unconscionable.
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Adam Sharp @adamcsharp.bsky.social · 22/11/2024
A list of bands in order of efficacy: 3. Placebo 2. The Cure 1. Prevention
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Dr Neil Pender BM MSc FRCP 🏳️‍🌈 @drneilpender.bsky.social · 17/11/2024
Dear followers, If you can help... LIKE and REPOST. Many thanks! #PalliativeCare #HAPM #HPM #HAPC #Hospice
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Bex @rebeccajpw.bsky.social · 21/11/2024
Dear lovely @bsky.app people, by any chance, please could we get a 'save draft' function (when you have finished accommodating the welcoming millions of people of course!). I often start a post & then need a reminder of something and have to discard it. Thank you for considering.
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Bex @rebeccajpw.bsky.social · 21/11/2024
Have started saying 'autochange' instead of 'autocorrect' bc often, those AI/machine learning suggestions are not a correction, but rather insanely peculiar meanderings off topic! Example, why would it change 'heaven' to 'Gertrude' a name I've never used?!
media.tenor.com
a woman in a black and white jacket says we 're in a very peculiar time
ALT: a woman in a black and white jacket says we 're in a very peculiar time
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Bex @rebeccajpw.bsky.social · 21/11/2024
Delighted to serve as guest editor and share this call for papers on #cultural consideration in #PalliativeCare. Any questions I can help with, message away! #hpm www.biomedcentral.com/collections/...
biomedcentral.com
Call for papers - Cultural considerations in palliative care
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Bex @rebeccajpw.bsky.social · 21/11/2024
Do any other people with #dyslexia find it impacts their ability to hear and interpret what people are saying? Every time I'm on the DC metro and the automated lady voice says 'court house' my brain goes 'SHE SAID WHOR! HOUSE' and I look up in bafflement, EVERYTIME.
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Eric Widera, MD @ewidera.bsky.social · 21/11/2024
I gave a palliative care talk to our UCSF IM interns this afternoon on “symptom management.” I asked what symptoms they want to cover. The first request was “existential distress and suffering.” I paused to collect my thoughts, which mainly was “damn, this new generation of physicians are good.”
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