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/
https://www.usemydata.org.uk/
Pinned
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
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
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.
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
#JoTaylor #METUPUK #LegacyOfChange
November 7, 2025 at 12:38 PM
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.
@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
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
October 22, 2025 at 8:42 AM
@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
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
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
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
October 20, 2025 at 5:01 PM
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
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
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
www.hdruk.ac.uk/about/hdr-uk...
#Healthdata #PatientData #Research
October 14, 2025 at 8:30 AM
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
www.hdruk.ac.uk/about/hdr-uk...
#Healthdata #PatientData #Research
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!
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!
October 9, 2025 at 9:36 AM
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!
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!
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?...
🎥 Watch now:
youtu.be/tUKjkzo9h0w?...
The Information Commissioner's Office Guidance on Data Anonymisation
YouTube video by use MY data
youtu.be
October 6, 2025 at 11:00 AM
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?...
🎥 Watch now:
youtu.be/tUKjkzo9h0w?...
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
However, research is decades behind other cancers.
Sharing data is vital to inform understanding and develop effective treatments & therapies.
www.salivaryglandcancer.uk
#SGCDay
#UseMyData
October 2, 2025 at 9:15 AM
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
However, research is decades behind other cancers.
Sharing data is vital to inform understanding and develop effective treatments & therapies.
www.salivaryglandcancer.uk
#SGCDay
#UseMyData
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/
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/
September 30, 2025 at 7:18 AM
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/
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/
🎬 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?...
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
September 11, 2025 at 8:41 AM
🎬 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?...
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?...
#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
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
September 9, 2025 at 9:05 AM
#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
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.
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
July 10, 2025 at 10:11 AM
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.
“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
#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
May 21, 2025 at 3:26 PM
“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
#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
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
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
May 8, 2025 at 12:20 PM
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
Read more👇 understandingpatientdata.org.uk/gp-record-data
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/4jsIH6Z
Prime Minister turbocharges medical research
Better and faster access to NHS data for researchers with gold standard security and privacy measures.
bit.ly
April 8, 2025 at 10:15 AM
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/4jsIH6Z
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?...
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
April 1, 2025 at 12:25 PM
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?...
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?...
Reposted by use MY data
💻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...
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...
March 21, 2025 at 8:00 AM
💻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...
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...
📣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
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
March 27, 2025 at 11:34 AM
📣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
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