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@dobe1

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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12.11.2024
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Latest posts by @dobe1

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U.S. at Fault in Strike on School in Iran, Preliminary Inquiry Says

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...

11.03.2026 15:05 πŸ‘ 3516 πŸ” 1599 πŸ’¬ 249 πŸ“Œ 202

More than delighted to be here in person

11.03.2026 13:06 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0

This asks the question- β€œWhose research is it?” Especially when much is funded by the public through taxation and donations.

11.03.2026 13:02 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Great to read the roadmap

11.03.2026 12:30 πŸ‘ 2 πŸ” 0 πŸ’¬ 1 πŸ“Œ 1

Fascinating and inspiring meeting that UK should be following @nihr.bsky.social @letsgetvocal.bsky.social

11.03.2026 12:24 πŸ‘ 2 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0
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.

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

Engaged launch

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

11.03.2026 11:34 πŸ‘ 8 πŸ” 4 πŸ’¬ 1 πŸ“Œ 1

Making the US Olympic Team does not require you to be a cheerleader for the Trump administration.

08.02.2026 16:53 πŸ‘ 3537 πŸ” 519 πŸ’¬ 92 πŸ“Œ 15
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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…

Empowering Patient Organizations and Patient Involvement in Guidelines and International Societies Meetings: The Example of Incontinence - ScienceDirect www.sciencedirect.com/science/arti...

08.02.2026 16:56 πŸ‘ 2 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0
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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...

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...

03.02.2026 16:33 πŸ‘ 2 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0
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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...

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...

30.01.2026 14:51 πŸ‘ 3 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0
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My first remarks since being arrested last night.

30.01.2026 23:30 πŸ‘ 25115 πŸ” 6653 πŸ’¬ 974 πŸ“Œ 280
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Movie review from Guardian on Melania.

30.01.2026 22:43 πŸ‘ 28012 πŸ” 7240 πŸ’¬ 1662 πŸ“Œ 816
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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...

The value of patient experience in multiple sclerosis research - The Lancet Neurology www.thelancet.com/journals/lan...

30.01.2026 14:54 πŸ‘ 3 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0
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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 πŸ€πŸΎπŸ‡ΊπŸ‡Έ

31.01.2026 04:40 πŸ‘ 22200 πŸ” 3969 πŸ’¬ 551 πŸ“Œ 146

God bless these people.

31.01.2026 08:17 πŸ‘ 9366 πŸ” 2170 πŸ’¬ 186 πŸ“Œ 85
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JANE FONDA: β€œI 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.”

31.01.2026 04:54 πŸ‘ 37393 πŸ” 11245 πŸ’¬ 825 πŸ“Œ 712
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The NIH has lost its scientific integrity. So we left β€œWe 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.

β€œWe 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.”

10.01.2026 14:07 πŸ‘ 120 πŸ” 60 πŸ’¬ 1 πŸ“Œ 0
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β€œThe democratic will of the Venezuelan people” is not even remotely a consideration of the Trump Admin. It is completely irrelevant to Trump.

05.01.2026 01:26 πŸ‘ 2519 πŸ” 551 πŸ’¬ 110 πŸ“Œ 16
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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.

β€œWe 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...

17.12.2025 10:13 πŸ‘ 17 πŸ” 5 πŸ’¬ 0 πŸ“Œ 1
A book about Dolly Parton on a blue book trolley. It's Dolly on a trolley.

A book about Dolly Parton on a blue book trolley. It's Dolly on a trolley.

You've heard of Elf on the Shelf but how about

17.12.2025 10:32 πŸ‘ 610 πŸ” 125 πŸ’¬ 17 πŸ“Œ 4
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Be part of life-changing research Find out how you can take part in health and care research through Be Part of Research #BePartofResearch

@swallowsgroup #HNCCONF2025
Check out Be Part of Research to find out how to take part and get involved bepartofresearch.nihr.ac.uk

05.11.2025 15:56 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0

Watch the moment diplomats walk out as Israeli PM speaks at UN - Sky News

26.09.2025 15:02 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0

What the science really says about autism – and why Trump is so wrong - The i Paper

23.09.2025 10:57 πŸ‘ 1 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Disillusioned Trump Fans Respond to Him on Epstein Truth Social was on fire responding to Trump's Epstein post.

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...

14.07.2025 12:58 πŸ‘ 3255 πŸ” 918 πŸ’¬ 371 πŸ“Œ 77

Empowering-Patients- through-Clinical-Trials- 3.13.25_clean.pdf aspe.hhs.gov/sites/defaul...

14.07.2025 17:35 πŸ‘ 3 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0
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Hope fromΒ FutureTrials25 Last month, in July, I had the absolute pleasure of attending the FutureTrials25Β eventΒ hosted by theΒ Centre for Clinical Trials at the University of Galway. It was a day filled with medical discove…

Some thoughts about my recent visit to @universityofgalway.bsky.social involveddotblog.wordpress.com/2025/07/14/h...

14.07.2025 18:03 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
Patient’s Voice 2025: 3rd International Conference About the Conference

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...

08.07.2025 16:05 πŸ‘ 2 πŸ” 2 πŸ’¬ 0 πŸ“Œ 0
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I’m still curious how he knows so much about what’s in the files.

08.07.2025 17:30 πŸ‘ 13079 πŸ” 2251 πŸ’¬ 1238 πŸ“Œ 218
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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 ...

www.cnn.com/2025/07/08/h...

08.07.2025 21:30 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Tragedy strikes Texas and some experts blame Trump cuts for the devastation Local offices of the National Weather Service reportedly had critical staff vacancies.

The tragedy is particularly chilling in light of a May open letter issued by five former NWS directors, who wrote that agency staff β€œwill have an impossible task to continue its current level of services” in light of the Trump cuts.

07.07.2025 22:06 πŸ‘ 853 πŸ” 343 πŸ’¬ 43 πŸ“Œ 20