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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. https://www.usemydata.org.uk/

25 Posts43 Follower54 Folgt
use MY data@usemydata.bsky.social · last mo.

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

use MY data logo with text; Public Webinar Tues 21 July, 10:00-11:30. Person holding a red megaphone in front of a blue background with the words: Good Data, Bad Headlines! What the public thinks-and why media matters.
use MY data@usemydata.bsky.social · 9mo ago

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.

@metupuk.bsky.social · 9mo ago

We honour Jo Taylor - founder of METUPUK and tireless advocate for people living with Metastatic Breast Cancer. Through her courage and determination, Jo changed the conversation around MBC, inspiring action, progress, and hope. #JoTaylor #METUPUK #LegacyOfChange

use MY data@usemydata.bsky.social · 10mo ago

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

Pop up banner promoting use MY data. A heart shaped, mutlicoloured collage of paper people on a white background sits beneath the use MY data logo. White text on a red background reads: "The only independent UK movement of patients, relatives and carers focussed on the use of patient data to save lives and improve outcomes." web address: usemydata.org.uk contact@usemydata.org.uk
use MY data@usemydata.bsky.social · last yr.

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.

Rory Cellan-Jones @rorycj.bsky.social · last yr.

open.substack.com/pub/rorycell... Health data - time to tell an upbeat story. I told the National Patient Data Day conference it was high time the Research community was a bit bolder in explaining the importance of sharing health data

use MY data@usemydata.bsky.social · last yr.

“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

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

on.ft.com

use MY data@usemydata.bsky.social · last yr.

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

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.

understandingpatientdata.org.uk