How to involve people in their data choices ? (🧵1/3). Discussion with members of public and healthcare policy professionals. #NPaDD @useMYdata

“For the public, the NHS will feel different: it will be digitally enhanced and patient centric” . Ming Tang, Chief Data and Analytics Officer, @NHSEngland .#NPaDD. @WYpartnership @useMYdata @DHSCgovuk @CityOfResearch @NIHR_ARC_YH @NIHRresearch @NHSSYICB @ConnectedBfd

We are looking forward to seeing you at @useMYdata #NPaDD day in Leeds today!

DARE UK is proud to sponsor the first-ever National Patient Data Day Conference (NPaDD) 2025, led by @useMYdata — a patient-designed, patient-driven event putting public voices at the centre of how health data is used in the UK. 🗓️ Tuesday, 24 June 2025.📍 The Queens Hotel,

#AMMF’s CEO, Helen Morement, discusses “The Power of Data”, and its importance to the rare and less common cancer community, with Chris Carrigan, Expert Data Adviser, #UseMyData, at #BigCancer52Conversation #cholangiocarcinoma #bileductcancer #cancer52org

Back in Leeds after 25 years! Unfortunately no time to look around, have caught up with friends and met new people ahead of the @useMYdata Patient Data Day tomorrow! Looking forward to hearing the latest in this field to take back to Frontier Science Scotland 🧬📊📈

@antonis02 @Cambridge_Uni @mhairi_aitken @turinginst @deemtembo @HDR_UK Richard Stephens of @useMYdata highlights the importance of transparency and trust from a patient perspective at #CRUKDataConf24 (AB)

We’re keeping #PPIE at the heart of #CRUKDataConf24 with the support of programme committee member, Debbie Keatley. Debbie is a member of @useMYdata, a patient advocate & sits on our Data Advisory Board, working on the frontline of making #HealthData accessible and transparent

t's #NationalPatientDataDay. For rare cancers like salivary gland cancer, patient data is key. It guides research, improves care, and helps uncover what patients truly need. Learn more from @useMYdata: #SGCUK #DataSavesLives

2️⃣ weeks ago, our Project Administrator Nikolina Pajic attended @useMYdata’s National Patient Data Day, where she networked & gained valuable insights into Patient & Public Involvement & Engagement (PPIE). Our Advisory Group member, Richard Stephens, also attended the event.

Monica Jefford from UseMyData emohasising inportance of collecting data safely and effectively "Data should be given willingly to help others knowing effective safeguards in place." #usemydata #bladdercancer

Chris Carrigan from @useMYdata highlights involving “patients in the decision-making roles rather than just the advisory roles” as a priority moving forward. ➡️ Complete our survey to help shape how we involve patients and the public in our work:

Love seeing these at #HealTAC2023 And hearing from.@useMYdata .#datasaveslives #NLProc

Looking forward to meeting #patient advocates and researchers at #HDRUKConference this week. Visit our stand to learn about the benefits of #useMYdata membership and our work promoting the trustworthy use of patient data to save lives and improve outcomes. #healthdata #research

Grab a #UseMyData badge and learn more about Dryad at stand 5 #BES2023

At #CRUKDataConf24, join Richard Stephens to discover the future of Designing Data Research to Create Patient and Public Benefit: @useMYdata | #PPI | #CancerResearch

📢SAVE THE DATE.🗓️ 24 June 2025.📍Leeds UK.The UK’s first NATIONAL PATIENT DATA DAY.ℹ️ Agenda set by patients for patients and the public.📈Stakeholders from across the patient data world.#NPaDD2025 #useMydata

Hear @BerginGoncalves discuss the importance of Information Sharing from a patient perspective . #CaldicottGuardian National conf: . @arjundhillon @NDGoffice @useMYdata @HTDigitalhealth @UKCaldicottGC @rcgp @ihrimuk.@DigiSocialCare @Dr_Hatz @natalie_banner

"use MY data is a fantastic patient advocacy organisation." @natalie_banner gets the panel discussion underway "Exploring the promise and addressing the challenges of AI-powered genomics" at #GERS20. Ceri Steele bringing the voice of #useMYdata Members to the conversation.