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dobe1.bsky.social

@dobe1.bsky.social
30 followers 27 following 36 posts

Patient advocate after throat cancer in 1995: From Ayr to Blogger, Facilitator, Speaker with an OBE and a Professorship (Hon) for University of Galway

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dobe1.bsky.social @dobe1.bsky.social · 27/03/2026
Reflections on my involvement with the UK Clinical Trials Registry ISRCTN on LinkedIn www.linkedin.com/posts/isrctn...
linkedin.com
Key Moments in the Development of Clinical Trial Registries – a brief look | UK's Study Registry (ISRCTN)
One of the things I try to do, as a Board Member for the UK’s Clinical Study Registry - ISRCTN, is raise awareness of what it is, what it does and why it matters. The Registry provides a registratio...
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The Francis Crick Institute @crick.ac.uk · 18/03/2026
New research from the Crick and @viblifesciences.bsky.social has shown how secondary breast cancer tumour cells can reprogram lung cells to supply them with fats for energy and other key functions. www.crick.ac.uk/news/2026-03...
crick.ac.uk
Taking advantage of metastatic cancer’s need for fats
Secondary breast cancer tumours reprogram lung cells to feed them energy-rich fats. Could this dependency be their downfall?
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Ron Filipkowski @ronfilipkowski.bsky.social · 18/03/2026
He was certainly afraid of Vietnam-style combat in Vietnam.
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Kyle Griffin @kylegriffin1.bsky.social · 11/03/2026
BREAKING NYT: An ongoing military investigation has determined that the United States is responsible for a deadly Tomahawk missile strike on an Iranian elementary school, according to U.S. officials and others familiar with the preliminary findings. www.nytimes.com/2026/03/11/u...
nytimes.com
U.S. at Fault in Strike on School in Iran, Preliminary Inquiry Says
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Open Research and Public Engagement Roadmap @engagedroadmap.bsky.social · 11/03/2026
Today’s launch of the ENGAGED Roadmap @tcddublin.bsky.social marks an important step forward for public involvement in open research in Ireland. At its best, research is shaped by the society it seeks to serve. #LetsGoEngaged #publicengagement #openresearch
Today’s launch of the ENGAGED Roadmap @tcddublin.bsky.social marks an important step forward for public involvement in open research in Ireland.
Today’s launch of the ENGAGED Roadmap @tcddublin.bsky.social marks an important step forward for public involvement in open research in Ireland.

Engaged launch
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Ron Filipkowski @ronfilipkowski.bsky.social · 08/02/2026
Making the US Olympic Team does not require you to be a cheerleader for the Trump administration.
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Lawrence (Larry) Mróz @drmroz.bsky.social · 08/02/2026
Empowering Patient Organizations and Patient Involvement in Guidelines and International Societies Meetings: The Example of Incontinence - ScienceDirect www.sciencedirect.com/science/arti...
sciencedirect.com
Empowering Patient Organizations and Patient Involvement in Guidelines and International Societies Meetings: The Example of Incontinence
Urinary incontinence represents one of the most prevalent yet under-recognized chronic health conditions worldwide and also a challenging public healt…
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Lawrence (Larry) Mróz @drmroz.bsky.social · 03/02/2026
Assessing patient engagement approaches in the development of patient reported outcome measures | Journal of Patient-Reported Outcomes | Springer Nature Link link.springer.com/article/10.1...
link.springer.com
Assessing patient engagement approaches in the development of patient reported outcome measures - Journal of Patient-Reported Outcomes
Journal of Patient-Reported Outcomes - Guidelines for the development and validation of patient-reported outcome measures recommend incorporating patient input to ensure relevance and...
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Lawrence (Larry) Mróz @drmroz.bsky.social · 30/01/2026
Evaluation and lessons learned regarding Public Involvement: a panel advising on an Alzheimer’s disease and related dementia cohort study | Research Involvement and Engagement | Springer Nature Link link.springer.com/article/10.1...
link.springer.com
Evaluation and lessons learned regarding Public Involvement: a panel advising on an Alzheimer’s disease and related dementia cohort study - Research Involvement and Engagement
Research Involvement and Engagement - Public involvement (PI) in research is increasingly requested, yet systematic evaluation is limited. This study evaluates whether a panel advising an...
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Don Lemon @donlemonofficial.bsky.social · 30/01/2026
My first remarks since being arrested last night.
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Ron Filipkowski @ronfilipkowski.bsky.social · 30/01/2026
Movie review from Guardian on Melania.
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Lawrence (Larry) Mróz @drmroz.bsky.social · 30/01/2026
The value of patient experience in multiple sclerosis research - The Lancet Neurology www.thelancet.com/journals/lan...
thelancet.com
The value of patient experience in multiple sclerosis research
The number of therapies approved to treat multiple sclerosis has grown substantially over the past 20 years, yet many people living with the disease continue to have symptoms that are not adequately c...
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Don Lemon @donlemonofficial.bsky.social · 31/01/2026
I won’t stop reporting the truth. The First Amendment is the bedrock of our democracy, and I’ll continue to fight to protect it 🤝🏾🇺🇸
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George Conway ⚖️🇺🇸 @gtconway.bsky.social · 31/01/2026
God bless these people.
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The Tennessee Holler @thetnholler.bsky.social · 31/01/2026
JANE FONDA: “I know Don Lemon. My husband created CNN. And I will fight for their right to speak… they arrested the wrong Don. This is how autocrats act. We can’t fall for it.”
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Kathleen Bachynski @bachynski.bsky.social · 10/01/2026
“We can no longer lend our credibility to an organization that has lost its integrity… each of us independently reached the decision to resign in protest of the actions of an administration that treats science not as a process for building knowledge, but as a means to advance its political agenda.”
statnews.com
The NIH has lost its scientific integrity. So we left
“We can no longer lend our credibility to an organization that has lost its integrity,” write four scientists and administrators who recently resigned from the NIH.
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Ron Filipkowski @ronfilipkowski.bsky.social · 05/01/2026
“The democratic will of the Venezuelan people” is not even remotely a consideration of the Trump Admin. It is completely irrelevant to Trump.
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The Francis Crick Institute @crick.ac.uk · 17/12/2025
“We need to take on the defence of science for the world.” In a wide-ranging and frank conversation, Paul Nurse reflects on his years leading the Francis Crick Institute with our new director, Edith Heard. www.crick.ac.uk/news/2025-12...
crick.ac.uk
Paul Nurse in conversation with Edith Heard
Standing up for science, the art of leadership and cups of tea with the Prime Minister - Paul Nurse reflects on his years as CEO of the Francis Crick Institute with new director Edith Heard.
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Orkney Library & Archive @orkneylibrary.bsky.social · 17/12/2025
You've heard of Elf on the Shelf but how about
A book about Dolly Parton on a blue book trolley. It's Dolly on a trolley.
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dobe1.bsky.social @dobe1.bsky.social · 05/11/2025
@swallowsgroup #HNCCONF2025 Check out Be Part of Research to find out how to take part and get involved bepartofresearch.nihr.ac.uk
bepartofresearch.nihr.ac.uk
Be part of life-changing research
Find out how you can take part in health and care research through Be Part of Research #BePartofResearch
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dobe1.bsky.social @dobe1.bsky.social · 26/09/2025
Watch the moment diplomats walk out as Israeli PM speaks at UN - Sky News
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dobe1.bsky.social @dobe1.bsky.social · 23/09/2025
What the science really says about autism – and why Trump is so wrong - The i Paper
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Ron Filipkowski @ronfilipkowski.bsky.social · 14/07/2025
Trump has received over 45,000 angry replies from MAGA to his Truth Social post on Epstein. Here are some of the replies that received the most likes. open.substack.com/pub/meidasto...
open.substack.com
Disillusioned Trump Fans Respond to Him on Epstein
Truth Social was on fire responding to Trump's Epstein post.
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Lawrence (Larry) Mróz @drmroz.bsky.social · 14/07/2025
Empowering-Patients- through-Clinical-Trials- 3.13.25_clean.pdf aspe.hhs.gov/sites/defaul...
aspe.hhs.gov
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dobe1.bsky.social @dobe1.bsky.social · 14/07/2025
Some thoughts about my recent visit to @universityofgalway.bsky.social involveddotblog.wordpress.com/2025/07/14/h...
involveddotblog.wordpress.com
Hope from FutureTrials25
Last month, in July, I had the absolute pleasure of attending the FutureTrials25 event hosted by the Centre for Clinical Trials at the University of Galway. It was a day filled with medical discove…
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Lawrence (Larry) Mróz @drmroz.bsky.social · 08/07/2025
Registration is now open for Where's the Patient Voice 2025! Patient’s Voice 2025: 3rd International Conference | UBC Health health.ubc.ca/events/patie...
health.ubc.ca
Patient’s Voice 2025: 3rd International Conference
About the Conference
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Ron Filipkowski @ronfilipkowski.bsky.social · 08/07/2025
I’m still curious how he knows so much about what’s in the files.
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dobe1.bsky.social @dobe1.bsky.social · 08/07/2025
www.cnn.com/2025/07/08/h...
cnn.com
World’s premier cancer institute faces crippling cuts and chaos | CNN
The Trump administration’s broadsides against scientific research have caused unprecedented upheaval at the National Cancer Institute, the storied federal government research hub that has spearheaded ...
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Mother Jones @motherjones.com · 07/07/2025
The tragedy is particularly chilling in light of a May open letter issued by five former NWS directors, who wrote that agency staff “will have an impossible task to continue its current level of services” in light of the Trump cuts.
motherjones.com
Tragedy strikes Texas and some experts blame Trump cuts for the devastation
Local offices of the National Weather Service reportedly had critical staff vacancies.
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MikeM3 @mikeg80.bsky.social · 05/07/2025
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dobe1.bsky.social @dobe1.bsky.social · 05/07/2025
www.theguardian.com/technology/2...
theguardian.com
‘The vehicle suddenly accelerated with our baby in it’: the terrifying truth about why Tesla’s cars keep crashing
Elon Musk is obsessive about the design of his supercars, right down to the disappearing door handles. But a series of shocking incidents – from drivers trapped in burning vehicles to dramatic stops o...
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Orkney Library & Archive @orkneylibrary.bsky.social · 24/06/2025
If everyone who follows us on Bluesky got another person to follow us on Bluesky then we'd have even more followers on Bluesky. Who do you know on Bluesky that doesn't follow us on Bluesky?
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Orkney Library & Archive @orkneylibrary.bsky.social · 24/06/2025
We now have more than 18000 followers on Bluesky. Thanks to everyone who has followed us here. It's a great place to be. ❤️ That's also more followers than we have on Facebook or Instagram. 👏
A photograph of a flock of sheep pouring through a gap in a stone wall to a new field. The old field is labelled Twitter and the new field is labelled Bluesky.
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Ron Filipkowski @ronfilipkowski.bsky.social · 25/06/2025
Trump canceled the briefing to Congress on the Iran bombings at the last minute and provided no explanation, but the leaked report saying the operation was not as successful as he claimed is definitely fake news because the two things can’t possibly be connected.
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dobe1.bsky.social @dobe1.bsky.social · 27/05/2025
Reporting trial results to those who take part in health research! What core elements should be included in these reports? oxfordbrc.nihr.ac.uk/pair/a-delph...
oxfordbrc.nihr.ac.uk
A Delphi survey to identify a core set of items for sharing the results of randomised trials with patients and the public | NIHR Oxford Biomedical Research Centre
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NPR @npr.org · 02/05/2025
The National Science Foundation, a major government funder of basic science research, is being shaken up with over 1,000 grants already terminated and the White House looking to halve its budget.
npr.org
Scientists reel as turmoil roils National Science Foundation
The National Science Foundation, a major government funder of basic science research, is being shaken up with over 1,000 grants already terminated and the White House looking to halve its budget
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Patient-Led Research Collaborative @patientled.bsky.social · 01/05/2025
PLRC joined other research organizations to provide statements for yesterday’s Senate Appropriations hearing, Biomedical Research: Keeping America’s Edge in Innovation. Our statement is under US Congress section here: patientresearchcovid19.com/advocacy/ 1/
patientresearchcovid19.com
Advocacy – Patient Led Research Collaborative
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The Francis Crick Institute @crick.ac.uk · 02/05/2025
Watch ‘Falsely Accused: Justice by Genomics’ held at the Crick this week, with experts in science, medicine and the law discussing the case of Kathleen Folbigg and the role of genomic investigation in unexplained child deaths. Catch up on all the expert talks: www.crick.ac.uk/news/2025-04...
crick.ac.uk
“Science uncovered the truth of why my children died, and set me free”
After twenty years in jail, convicted of killing her four children, Kathleen Folbigg is sharing her experience of being falsely accused alongside the team of scientists and lawyers who used advances i...
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NPR @npr.org · 02/05/2025
The VA has abruptly ended the only low-interest, affordable loan modification option for thousands of vets who are behind on their mortgages. If you're a vet at risk of foreclosure, we want to hear your story.
npr.org
If you're a military veteran at risk of foreclosure, NPR wants to hear from you
The VA has abruptly ended the only low-interest, affordable loan modification option for thousands of vets who are behind on their mortgages. We want to hear your story.
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dobe1.bsky.social @dobe1.bsky.social · 06/04/2025
What does Patient, Public Involvement look like in Research Governance? What is it like to involve the public in such strategic roles? How might we better involve research with communities? Help us find some answers wearevocal.org/wlrs/listen-... @letsgetvocal @NIHRinvolvement
wearevocal.org
How do we best work together in Governance of health research?
Vocal Director Bella and public partner Derek share a new initiative and reflections on public involvement in governance of health research
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Ursula von der Leyen @vonderleyen.ec.europa.eu · 04/04/2025
When our partners grow and prosper, Europe grows too. This is how a partnership should be. This is our vision. And this the Global Gateway method. My remarks at the press conference → europa.eu/!796TQK
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dobe1.bsky.social @dobe1.bsky.social · 04/04/2025
As more patients/members of the public get involved with health research boards and governance - what does it mean? wearevocal.org/wlrs/listen-... [wearevocal.org]
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Ron Filipkowski @ronfilipkowski.bsky.social · 03/04/2025
I posted the video over 2 years ago. People thought he was bluffing I guess.
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Ron Filipkowski @ronfilipkowski.bsky.social · 03/04/2025
Welcome to Idiocracy.
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Ursula von der Leyen @vonderleyen.ec.europa.eu · 03/04/2025
The universal tariffs announced by the US are a major blow to businesses and consumers worldwide. Europe is prepared to respond. We'll always protect our interests and values. We're also ready to engage. And to go from confrontation to negotiation. Full statement → europa.eu/!mHxFMh
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Open Research and Public Engagement Roadmap @engagedroadmap.bsky.social · 27/03/2025
ENGAGED; Co-Creating Ireland's Public Involvement in Open Research Roadmap. ENGAGED is building a national roadmap to shape public involvement in open research in Ireland. We believe that research can and does play an important role in tackling societal challenges #OpenResearch #PublicEngagement
ENGAGED; Co-Creating Ireland's Public Involvement in Open Research Roadmap. ENGAGED is building a national roadmap to shape public involvement in open research in Ireland. We believe that research can and does play an important role in tackling societal challenges.  By making research more open, we believe that we can build wider communities of support for researchers, and we can make research more useful and usable. We believe that, where possible, research should be more accessible, more transparent, and a shared resource for the benefit of all who need it.
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Open Research and Public Engagement Roadmap @engagedroadmap.bsky.social · 01/04/2025
We’re hosting 5 workshops (May–Oct 2025) to co-create Ireland’s open research roadmap. Researchers, policymakers, NGOs & communities. Help shape real impact Register your interest at the link below : 👉 forms.office.com/e/bBpqWVNEfe #OpenResearch #PublicEngagement #CitizenScience #SciComm
We are running five Collective Intelligence Workshops between May and October 2025 to explore how research can better connect with people—informing policy, supporting families, and empowering advocacy.



These workshops are central to ENGAGED, a national initiative to shape a roadmap for open and inclusive research that reflects Ireland’s needs. While we’re learning from international models, the focus is on co-creating solutions that work here.



Together, through the workshops, we will:

Explore how open research is working in Ireland

Identify barriers to public involvement

Shape practical, inclusive solutions



Want to take part?



 You can register your interest at the link below :

 👉  https://forms.office.com/e/bBpqWVNEfe



#OpenResearch #PublicEngagement #CitizenScience #SciComm
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Ron Filipkowski @ronfilipkowski.bsky.social · 03/04/2025
Dark Pence is back.
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dobe1.bsky.social @dobe1.bsky.social · 03/04/2025
Interested in Trials Methodology Research with Patient, Public Involvement. Join us on a 'roadtrip' eventbrite.ie/e/roadmap-fo...
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