iiinova — where your digital self keeps evolving

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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Reposted by use MY data

LifeArc @lifearc.bsky.social · 23/06/2026

We’re sponsoring National Patient Data Day 2026, led by @usemydata.bsky.social. Join webinars tomorrow to celebrate the use of patient data and discuss how to ensure that health data is used to save lives and improve outcomes for all. Register now: bit.ly/3Rkuvny #NPaDD2026

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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 · 13/03/2026

DARE UK has launched Our Data Our Say, an online network for people who want a say in how public data is used for public good. Open to all, no experience required. Join now: hubs.li/Q043YFXl0 #DAREUK #OurDataOurSay

hubs.li

Our Data Our Say - DARE UK

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use MY data @usemydata.bsky.social · 07/11/2025

A valued Member of #useMYdata and a huge voice in lobbying for collection & use of patient data to improve outcomes for MBC patients, Jo demanded that patients be heard and counted to make change: “Without data, how can we make any progress?” #JoTaylor we salute your courage & determination.

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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 · 06/10/2025

When your health data is used for analysis or research, it is usually anonymised to protect your identity. Our recent Education Session looks at @infocommission.bsky.social guidance on anonymisation of data in the UK and how it is applied. 🎥 Watch now: youtu.be/tUKjkzo9h0w?...

youtu.be

The Information Commissioner's Office Guidance on Data Anonymisation

YouTube video by use MY data

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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 · 11/09/2025

🎬 Our latest Education Session recording looks at the UK Government's new Data (Use and Access) Act 2025. Watch now to learn more about the Act’s wide-ranging provisions, and some important changes to the UK’s data protection and privacy legislation. #PatientData youtu.be/iDklYdPczio?...

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Introduction to the Data Use and Access Act 2025

YouTube video by use MY data

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

#RAREsummit25 is back! Bringing scientists, innovators, policy-makers, funders & patient orgs together to drive change. This year’s event reflects on: ✨ A decade of progress 🚀 A future of possibilities We're proud to be event media partners bit.ly/4m0KHnD @camrare.bsky.social #StrongerTogether

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RAREsummit23 Highlights: CamRARE

YouTube video by Cambridge Rare Disease Network (CamRARE)

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use MY data @usemydata.bsky.social · 10/07/2025

Big thanks to @rorycj.bsky.social, a #useMYdata Member and speaker at our #NationalPatientDataDay for championing the patient voice and highlighting the importance of sharing good news stories about how our health data benefits research and our own care.

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use MY data @usemydata.bsky.social · 21/05/2025

“I naively thought that the NHS, being a national organisation, would have access to data just like a bank or building society.” #useMYdata Member David Snelson on the impact for patients of NHS's labyrinthine systems for collecting and sharing our patient data @financialtimes.com on.ft.com/3ZnPerQ

on.ft.com

Patient data could power the NHS. Much of it is still stuck on paper

The UK wants a technological revolution in healthcare but complex information systems will make that hard to deliver

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use MY data @usemydata.bsky.social · 08/05/2025

A new report commissioned by Understanding Patient Data finds limited understanding of how GP records are managed and highlights the need for clear communication as plans for a Single Patient Record develop. Read more👇 understandingpatientdata.org.uk/gp-record-data

understandingpatientdata.org.uk

GP record data: public perspectives and information needs

Understanding Patient Data supports conversations with the public, patients and healthcare professionals about the uses of health information for care and research.

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

The announcement from the Prime Minister that the government and @wellcometrust.bsky.social are partnering to establish a new Health Data Research Service to "turbocharge" medical research is very welcome news to use MY data Members. bit.ly/4jsIH6Z

bit.ly

Prime Minister turbocharges medical research

Better and faster access to NHS data for researchers with gold standard security and privacy measures.

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use MY data @usemydata.bsky.social · 01/04/2025

What happens to your health data when it’s used in research? How is it shared and protected, and how, ultimately, does it help to improve patient care for everyone? Watch the latest video in our Education Session series to find out: youtu.be/MaN8Oo0DDwI?...

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Health Data & Research: What you need to know

YouTube video by use MY data

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Reposted by use MY data

UK Kidney Association @ukkidney.org · 21/03/2025

💻Join the next patient data webinar next Friday (28 March), exploring Kidney Data Analysis using national datasets. Hear from experts on the UK Renal Registry, patient involvement & how RaDaR drives research for patient benefit. Register for free now: www.ukkidney.org/hea...

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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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