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

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 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

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!

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?...

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

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/

🎬 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?...

#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.

“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

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

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

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...

📣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