@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 @useMYdata]

To stay in touch with #useMYdata head over to our LinkedIn page: https://t.co/cp3XPW31vQ

To watch recordings of our Education Sessions visit: https://t.co/xjkRaRMdQ1

To join use My data visit: https://t.co/vWNCu9IhEK

[AMRC @AMRC]

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. https://t.co/GVGOeYnhOC

To fix it, the Government must do two things in parallel… 🧵 #DataAccess

[@useMYdata @useMYdata]

📢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
https://t.co/a9TmjIHsgL
#NPaDD2025 #useMydata

[@useMYdata @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.
https://t.co/bdLGVuKog9

[@useMYdata @useMYdata]

"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.

[DARE UK @DARE_UK1]

📢 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 professionals and researchers involved in PIE within data science. If you have experience of PIE in data research, PEDRI would like to hear from you!

Share your views by completing this quick 10-minute survey to help PEDRI identify existing PIE resources, discover information gaps and highlight areas for improvement: https://t.co/UVnTgOh7Px

Please share the survey with colleagues and networks to help PEDRI receive as many responses to build the online resource hub.

DARE UK is a founding partner of PEDRI.

#DAREUK #PEDRI #data #research #public

[@useMYdata @useMYdata]

Ceri will be putting the patient's perspective in this afternoon's AI and Genomics panel discussion, "Exploring the promise and addressing the challenges of AI-powered genomics" (14:25-15:00).
#useMydata #research

[@useMYdata @useMYdata]

We're excited to be @GenomicsEngland #GERS2024 today. #useMYdata members, Ceri Steele and Yvonne Adebola are looking forward to meeting attendees and answering questions. Stop by to say hello and find out more about our work.
#PatientData #Transparency

[Genomics England @GenomicsEngland]

The team have been working hard in preparation to welcome you all to the 2024 Genomics England Research Summit tomorrow, we can't wait to get stuck into the action! #GERS2024

[Science and Innovation at Cancer Research UK @CRUKresearch]

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.

👉 https://t.co/h9J3xCzH1Y

[@useMYdata @useMYdata]

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 🙏

[Cancer52 also on Bluesky @cancer52org.bsky.social @Cancer52org]

Next up at the #BigCancer52Conversation we explore the power of data in rare and less common cancer research and care

[@useMYdata @useMYdata]

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

[Cancer52 also on Bluesky @cancer52org.bsky.social @Cancer52org]

Incredibly excited to be hosting the #BigCancer52Conversation tomorrow - Wed 19th June at @Level39CW, bringing together the wider rare and less common cancer community to progress outcomes #Level39

[Health Data Research UK (HDR UK) @HDR_UK]

📋 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.

🔗 https://t.co/gpnKAn6uLJ

[EasternEnglandSDE @EasternSDE]

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

[@useMYdata @useMYdata]

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:
https://t.co/4TzZKEi01d

[The Galien Foundation @GalienFdn]

Good morning from the 2024 #PrixGalien UK Forum! Follow our channels and share your #PrixGalien moments as we host spirited discussions with Nobel Laureates, top policy makers, and leading industry executives.

[@useMYdata @useMYdata]

The review proposes strengthening the research pledge (“to inform you of research studies in which you may be eligible to participate”) with an additional sentence, "Health research and the offer to be part of research should be integrated into health and care across the NHS.”

[@useMYdata @useMYdata]

The review of the #NHS Constitution includes a question on health data in research. We are gathering the views of our Members to submit a collective response.
#useMydata #transparency #patientdata

[Department of Health and Social Care @DHSCgovuk]

We're keen to hear whether you feel the NHS Constitution reflects the experiences you have and gives you the support you need in your care and your working lives.

Share your views in our consultation: https://t.co/fRlCVHjp8h

[@useMYdata @useMYdata]

Under the NHS Act 2006, the Secretary of State, NHS England and ICBs "have duties to facilitate or otherwise promote research on matters relevant to the health service, and to facilitate the use of evidence obtained from research."

[EasternEnglandSDE @EasternSDE]

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."https://t.co/oNqnkZFSUy

[Health Data Research UK (HDR UK) @HDR_UK]

🌟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 @useMYdata]

#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

[Westminster Forum Projects @wfpevents]

Discover the Next steps for patient records in the NHS and use of patient data in England with Westminster Health Forum on the 22nd of May, with speakers including @ndgoffice @UniofOxford @acumentice and more!

Conference info & registration: https://t.co/gl8aJrQKSF