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use MY data

@usemydata.bsky.social

use MY data is unique. We are the only independent UK movement of patients, relatives & carers focussed on the USE of patient data to save lives & improve outcomes. www.usemydata.org.uk

Posts Replies Media

use MY data @usemydata.bsky.social · 10/07/2026

Good Data, Bad Headlines! What the Public Thinks— and Why Media Matters 📣Public webinar 🕙Tuesday 21 July ❘ 10:00-11:30 ❘ via Zoom ❘ FREE How are public attitudes to patient data use changing, what is driving those shifts, and why they matter. Register now: bit.ly/4pfLJzp

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use MY data @usemydata.bsky.social · 16/06/2026

📣Our #NationalPatientDataDay programme is now live. One day, two free webinars, and a host of distinguished speakers from across the patient data world. Plus #NPaDD Umbrella events all month. Visit our website for full programme of events and speaker details. 🎤 www.usemydata.org.uk/news-events

Advertisement for use MY data's National Patient Data Day webinar agenda on June 24th. Yellow and white text on a blue background.

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use MY data @usemydata.bsky.social · 22/04/2026

📣 SAVE THE DATE! Wednesday 24 June 2026 is #NationalPatientDataDay. 👉Find out more: bit.ly/4sNxQsk Its our health, our data, our voice! #Transparency #Trust

Advertisement for use MY data's National Patient Data Day, 24 June 2026. Yellow and white text on a blue background. Running across the top of the image is a banner reading, save the date.

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use MY data @usemydata.bsky.social · 22/10/2025

@‌camrare.bsky.social #RAREsummit25 is packed with energy and ideas! From inspiring speakers to hands-on workshops like: 💡 Digital Twins in Rare Diseases 🧬 Naming Rare Conditions: Finding the Right Words Be part of the conversation shaping rare disease innovation: camraredisease.org/raresummit25

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use MY data @usemydata.bsky.social · 20/10/2025

Same message, fresh look! We've been hard at work this year polishing our appearance. Now we're thrilled to show off our new logo and website designed to bring our mission, vision and aims to even more patients and to inform even more discussions about patient data. www.usemydata.org.uk

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use MY data @usemydata.bsky.social · 14/10/2025

We are heading to Glasgow this week for the #HDRUKConference. If you are planning to be there, please do drop by our stand in the exhibition area and say hello. www.hdruk.ac.uk/about/hdr-uk... #Healthdata #PatientData #Research

Graphic promoting HDR UK Conference 2025, 15-16 October/Glasgow.

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use MY data @usemydata.bsky.social · 09/10/2025

The countdown is on ⏳ #RAREsummit25 is just a month away (6 Nov)! The agenda is packed with diverse voices, patient-driven insights & bold innovation. www.camraredisease.org/raresummit25... Join the conversation! 💜 Grab your ticket + dinner spot now!

An abstract image formed of an array of triangles in the shape of a forward facing arrow. Some of the triangles contain pictures from the previous summits, illustrating the talks, exhibitions and conversations. Text: Thurs 6 November at Hinxton Hall, Wellcome Genome Campus.

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use MY data @usemydata.bsky.social · 02/10/2025

Salivary gland cancer is rare, but raising awareness can lead to earlier diagnosis and better outcomes. However, research is decades behind other cancers. Sharing data is vital to inform understanding and develop effective treatments & therapies. www.salivaryglandcancer.uk #SGCDay #UseMyData

Graphic image promoting Salivary Gland Cancer Day, 4th October. Silhouette of two people hugging on a turquoise/blue background and a multi-coloured ribbon. Additional text reads: Once Community, One Cause: Standing together in solidarity for positive change.

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use MY data @usemydata.bsky.social · 30/09/2025

Be in the room where ideas begin! At @camrare.bsky.social #RAREsummit25, 3 patient voices will pitch research ideas shaped by their communities & lived-experience priorities in the Rare Disease Research Network Showcase. Tickets: www.camraredisease.org/raresummit25/

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use MY data @usemydata.bsky.social · 08/04/2025

Commenting on the plan for "a secure single access point to national-scale datasets" use MY data Chair Richard Stephens said: "This is excellent news for current and future patients, and for our health services. It also shows that the voices of use MY data's Members are being heard and heeded."

Quote from Richard Stephens of use MY data. Text reads "This is excellent news for current and future patients, and for our health services. It also shows that the voices of use MY data's Members are being heard and heeded."

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use MY data @usemydata.bsky.social · 27/03/2025

📣Book your spot at National Patient Data Day! bit.ly/3Xxsu7U 📅 Tuesday 24 June 2025, Leeds UK Join patients & stakeholders from across the patient-data world at the UK's first ever patient-led, patient-designed health data conference. Learning, discussion & networking. #NPaDD #PatientData #NHS

Poster promoting use MY data's National Patient Data Day conference, Tuesday 24 June 2025, Leeds, UK.

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