@useMYdata
@useMYdata
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The only independent UK movement of patients, relatives and carers focussed on the use of patient data to save lives and improve outcomes
United Kingdom
Joined July 2016
To stay in touch with #useMYdata head over to our LinkedIn page: To watch recordings of our Education Sessions visit: To join use My data visit:
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RT @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 o….
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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.#NPaDD2025 #useMydata
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"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.
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"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.
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RT @DARE_UK1: 📢 Help the Public Engagement in Data Research Initiative (PEDRI) to create an online resource hub for Public Involvement and….
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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.
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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.
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
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RT @CRUKresearch: David Snelson, @useMYdata will join our webinar to explore agency, ownership, transparency and trust in research data. U….
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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 🙏.
Next up at the #BigCancer52Conversation we explore the power of data in rare and less common cancer research and care
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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.
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
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RT @HDR_UK: 📋 Are you a #DataScience professional or researcher involved in Public Involvement and Engagement (PIE)?. Complete PEDRI's surv….
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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:.
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.
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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.”.
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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.".
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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.
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:
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RT @EoE_SDE: What matters when #NHS #patientdata is used for #research? Learn about the #EastofEnglandSDE and share your thoughts in one of….
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RT @HDR_UK: 🌟We’re celebrating Transparency Impact Week!. Stay tuned and discover how the #UKHealthDataResearchAlliance is working to impro….
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#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.
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:
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