Lightnews — Scholar-powered news

use MY data @usemydata.bsky.social · 1d

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.

use MY data @usemydata.bsky.social · 4d

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?...

The Information Commissioner's Office Guidance on Data Anonymisation

YouTube video by use MY data

youtu.be

use MY data @usemydata.bsky.social · 8d

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.

2 2

use MY data @usemydata.bsky.social · 11d

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/

1

use MY data @usemydata.bsky.social · 29d

🎬 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?...

Introduction to the Data Use and Access Act 2025

YouTube video by use MY data

youtu.be

use MY data @usemydata.bsky.social · Sep 9

#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

RAREsummit23 Highlights: CamRARE

YouTube video by Cambridge Rare Disease Network (CamRARE)

youtu.be

1

use MY data @usemydata.bsky.social · Jul 10

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 · Jun 25

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

Health Data - Time to Tell an Upbeat Story

The problem, I told the National Patient Data Day event in Leeds yesterday, could be summed up in one Guardian headline:

open.substack.com

use MY data @usemydata.bsky.social · May 21

“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 · May 8

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

use MY data @usemydata.bsky.social · Apr 8

We have long campaigned for a truly National Health Record to:
✅give us personal access to our own health record and
✅enable the use of our anonymised data in research to identify better approaches to prevention & diagnosis of disease & to support smarter, more personalised
treatment
bit.ly/3Een6QG

bit.ly

use MY data @usemydata.bsky.social · Apr 8

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."

1

use MY data @usemydata.bsky.social · Apr 8

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

Prime Minister turbocharges medical research

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

bit.ly

1 1

use MY data @usemydata.bsky.social · Apr 1

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?...

Health Data & Research: What you need to know

YouTube video by use MY data

youtu.be

1

Reposted by use MY data

UK Kidney Association @ukkidney.org · Mar 21

💻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...

4 4

use MY data @usemydata.bsky.social · Mar 27

#NPaDD speakers include:

🎤@rorycj.bsky.social & use MY data Member

🎤Professor Pearse Keane of @ucleye.bsky.social

🎤Dr Nicola Byrne, National Data Guardian

🎤Ming Tang, Chief Data and Analytics Officer for NHS England

🎤Emma Kinloch
Founder, Salivary Gland Cancer UK & use MY data Member

use MY data @usemydata.bsky.social · Mar 27

On the agenda:

🔦 Achieving a National Health Data Service for the UK
🔦Establishing a UK-wide research data environment for rare diseases
🔦Data & inequalities
🔦Big data for complex disease
🔦Involving people in their data choices
🔦Health data literacy in younger people
🔦Me, my data and (A)I

#NPaDD

1

use MY data @usemydata.bsky.social · Mar 27

📣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.

1 2 3