@useMYdata @useMYdata
The only independent UK movement of patients, relatives and carers focussed on the use of patient data to save lives and improve outcomes useMYdata.org United Kingdom Joined July 2016-
Tweets3K
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Followers2K
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Following685
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Likes5K
@useMYdata retweeted
Unlocking NHS patient data has the power to transform UK care and research. But the system isn't working, and the UK is missing out. bit.ly/3VZBm4C To fix it, the Government must do two things in parallel… 🧵 #DataAccess
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📢SAVE THE DATE 🗓️ 24 June 2025 📍Leeds UK The UK’s first NATIONAL PATIENT DATA DAY ℹ️ Agenda set by patients for patients and the public 📈Stakeholders from across the patient data world bit.ly/3WtjIaI #NPaDD2025 #useMydata
"Patient power: How one patient editor influences research." uMd Chair, Richard Stephens talks to @bmj_latest about his role as co-editor in chief of 'Research Involvement and Engagement' committed to delivering the patient or public voice in research. bmj.com/content/386/bm…
"use MY data is a fantastic patient advocacy organisation." @natalie_banner gets the panel discussion underway "Exploring the promise and addressing the challenges of AI-powered genomics" at #GERS20. Ceri Steele bringing the voice of #useMYdata Members to the conversation.
@useMYdata retweeted
📢 Help the Public Engagement in Data Research Initiative (PEDRI) to create an online resource hub for Public Involvement and Engagement (PIE) best practice in data research and statistics! One of PEDRI’s primary goals is to address resource and information gaps for…
@useMYdata retweeted
David Snelson, @useMYdata will join our webinar to explore agency, ownership, transparency and trust in research data. Using his cancer data as an example, David will illustrate how valuable data will go underutilised unless databases are joined up. 👉 bit.ly/4bNkILR
Our own @C_Carrigan and @HelenMorement discussing the power of data to challenge untested assumptions to help ensure that care and funding is directed where it is needed most in the rare cancer community. One of many stimulating #BigConversations sparked @Cancer52org yesterday 🙏
Our own @C_Carrigan and @HelenMorement discussing the power of data to challenge untested assumptions to help ensure that care and funding is directed where it is needed most in the rare cancer community. One of many stimulating #BigConversations sparked @Cancer52org yesterday 🙏
We're looking forward to being part of @Cancer52org's #BigConversation tomorrow. Our Data Adviser @C_Carrigan will be discussing "The power of data" with @HelenMorement, CEO @CharityAMMF #useMydata #SavingLivesTogether
We're looking forward to being part of @Cancer52org's #BigConversation tomorrow. Our Data Adviser @C_Carrigan will be discussing "The power of data" with @HelenMorement, CEO @CharityAMMF #useMydata #SavingLivesTogether
@useMYdata retweeted
📋 Are you a #DataScience professional or researcher involved in Public Involvement and Engagement (PIE)? Complete PEDRI's survey to help us identify existing PIE resources and shape an online hub for PIE best practice in data research and statistics. 🔗 hubs.li/Q02C1SbY0
@useMYdata retweeted
What do you think about using #NHS patient data for Research? Take just 5 minutes to complete our survey and make your voice heard. #communityvoice #everyvoicecounts #EoE_SDE #Hertfordshire #Bedfordshire
Our Executive Group Chair, Richard Stephens will be bringing the patient perspective to Panel 4 of the #PrixGalien UK Forum today at 2:45pm, on the topic: "Data Driven Medicine: The NHS as a strategic partner in Life Sciences". Follow the live stream here: linkedin.com/events/7201436…
Our Executive Group Chair, Richard Stephens will be bringing the patient perspective to Panel 4 of the #PrixGalien UK Forum today at 2:45pm, on the topic: "Data Driven Medicine: The NHS as a strategic partner in Life Sciences". Follow the live stream here: linkedin.com/events/7201436…
@useMYdata retweeted
What matters when #NHS #patientdata is used for #research? Learn about the #EastofEnglandSDE and share your thoughts in one of four webinars on June 4th, 13th, 17th, and 27th respectively. The topic: "Using NHS data from the East of England for research."bit.ly/4b7T0JP
@useMYdata retweeted
🌟We’re celebrating Transparency Impact Week! Stay tuned and discover how the #UKHealthDataResearchAlliance is working to improve accessible information about #TransparentDataAccess for researchers, patients and the public. Let’s dive into where it all began... 🧵(1/2)
#useMYdata Member @PJohnMarsh99 will be bringing the patient perspective to the panel: "Examining the future of data management, integration and the Federated Data Platform" @wfpevents Westminster Health Forum on 22 May. #transparency
#useMYdata Member @PJohnMarsh99 will be bringing the patient perspective to the panel: "Examining the future of data management, integration and the Federated Data Platform" @wfpevents Westminster Health Forum on 22 May. #transparency
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