use MY data

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.

Rare summit branded graphic with text in a hexagon reading: Workshop: Digital Twins: Explore the potential of digital twins, virtual simulations of patients, to transform rare disease research, care, and innovation. Headshot photos of the three speakers: Dr Crina Samarghitean of CSA14 Health; Dr Ellen McDonagh & Evangelina Petsalaki of EMBL-EBI

Rare summit branded graphic with text in a hexagon reading: Workshop: Naming Rare Conditions, Finding the right words: Due to inconsistencies in naming conditions, families face unnecessary distress, miscommunication, and difficulty finding reliable information and support. Headshot photos of the four speakers: Sarah Wynn & Francesca Wicks of Unique, Dr Jonathan Roberts from Cambridge University & Dr Nicky Wiffin from Oxford University.

@‌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

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

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

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

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

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.

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!

YouTube video by use MY data The Information Commissioner's Office Guidance on Data Anonymisation

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?...

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.

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

A large hexagon contains the RDRN logo, with 3 smaller hexagons below containing David Hogan and Scott Hutchings photos, and the Children's Hyperinsulinism logo, all surrounded by triangles in the Rare Summit branding style.

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/

YouTube video by use MY data Introduction to the Data Use and Access Act 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?...

YouTube video by Cambridge Rare Disease Network (CamRARE) RAREsummit23 Highlights: CamRARE

#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

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.

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

“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

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.

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

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

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."

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."

Prime Minister turbocharges medical research Better and faster access to NHS data for researchers with gold standard security and privacy measures.

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

YouTube video by use MY data Health Data & Research: What you need to know

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?...

💻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...

#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

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

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

📣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