The only independent UK movement of patients, relatives and carers focussed on the use of patient data to save lives and improve outcomes
United Kingdom
Joined July 2016
- Tweets3.3K
- Following662
- Followers2K
- Likes4.6K
@useMYdata retweeted
Unlocking NHS patient data has the power to transform UK care and research. But the system isn't working, and the UK is missing out. bit.ly/3VZBm4C
To fix it, the Government must do two things in parallel… 🧵 #DataAccess
@useMYdata retweeted
📢 Help the Public Engagement in Data Research Initiative (PEDRI) to create an online resource hub for Public Involvement and Engagement (PIE) best practice in data research and statistics!
One of PEDRI’s primary goals is to address resource and information gaps for professionals and researchers involved in PIE within data science. If you have experience of PIE in data research, PEDRI would like to hear from you!
Share your views by completing this quick 10-minute survey to help PEDRI identify existing PIE resources, discover information gaps and highlight areas for improvement: forms.office.com/pages/respo…
Please share the survey with colleagues and networks to help PEDRI receive as many responses to build the online resource hub.
DARE UK is a founding partner of PEDRI.
#DAREUK #PEDRI #data #research #public
@useMYdata retweeted
David Snelson, @useMYdata will join our webinar to explore agency, ownership, transparency and trust in research data.
Using his cancer data as an example, David will illustrate how valuable data will go underutilised unless databases are joined up.
👉 bit.ly/4bNkILR
@useMYdata retweeted
📋 Are you a #DataScience professional or researcher involved in Public Involvement and Engagement (PIE)?
Complete PEDRI's survey to help us identify existing PIE resources and shape an online hub for PIE best practice in data research and statistics.
🔗 hubs.li/Q02C1SbY0
ALT Take part in PEDRI's latest resource survey and share your insights into materials used by Patient and/or Public Involvement and Engagement professionals in data science.
@useMYdata retweeted
What do you think about using #NHS patient data for Research?
Take just 5 minutes to complete our survey and make your voice heard.
#communityvoice #everyvoicecounts #EoE_SDE #Hertfordshire #Bedfordshire
@useMYdata retweeted
What matters when #NHS #patientdata is used for #research? Learn about the #EastofEnglandSDE and share your thoughts in one of four webinars on June 4th, 13th, 17th, and 27th respectively. The topic: "Using NHS data from the East of England for research."bit.ly/4b7T0JP
@useMYdata retweeted
🌟We’re celebrating Transparency Impact Week!
Stay tuned and discover how the #UKHealthDataResearchAlliance is working to improve accessible information about #TransparentDataAccess for researchers, patients and the public.
Let’s dive into where it all began... 🧵(1/2)
ALT Transparency Impact Week, 13-17 May 2024. Improving transparency in data access processes for health data research
@useMYdata retweeted
📢The next ONS Research Excellence Series talk is on Thursday 9 May, 10:30-11:30am, where
@Sarah_McKenna63 and Elizabeth Nelson
will talk about the co-production of data-driven research with historically excluded groups.
BOOK YOUR SPOT HERE ⬇️
forms.office.com/pages/respo…
@useMYdata retweeted
Taking part in #healthdata research can improve our future lives. Do you want to know how? Come and join to join our webinar on April 29th (10:30-12:00) followed by a choice of 3 workshops (13:00-14:00). eventbrite.co.uk/e/have-your… @NIHRCRNeoe @CPFT_Research @CUH_NHS @NIHRcommunity
@useMYdata retweeted
Our latest SWAIH talk introducing the One Devon Dataset is next week on Monday 22nd April.
The dataset links GP, secondary care, community health, mental health, social care and wider population data.
More info, and sign-up here: bit.ly/3TA0ZHU
@useMYdata retweeted
🆕We’ve published guidance to improve transparency in health and social care.
We’re supporting health and social care organisations to be transparent with people about how their personal information is being used.
More information: ico.org.uk/about-the-ico/med…
ALT A doctor consults a medical chart. Icons of a cross and an arrow are superimposed on top.
@useMYdata retweeted
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: hubs.li/Q02snrYP0
@useMYdata retweeted
New Special Issue Call for Submissions is now OPEN!
Data Transparency - an emerging and essential element in building public trust in the use of personal health and social care data.
Full details of the call can be found here: ijpds.org/calls/data-transpa……
#DataTransparency
@useMYdata retweeted
📢 @HRALatest are hosting a free, online workshop for #MakeitPublic week, to address the barriers to registering research.
Come along and hear from influential speakers from across the research sector.
📆 Thurs 21 March, 1pm to 4pm.
Learn more: hubs.li/Q02pDr4K0
@useMYdata retweeted
📣 We are recruiting for our NAoMe Patient & Public Involvement Forum!
If you have metastatic #breastcancer (MBC) or are a friend/relative/carer for someone with MBC - email us 👉 [email protected]
@BreastCancerNow @METUPUKorg @ICPVtweets @forcateam @UseMyData
@useMYdata retweeted
Have your say about health data research!🧑💻
@HDR_UK has launched its Patient and Public Involvement and Engagement strategy for 2024-28 and is inviting members of the public to give their views.
Find out more below👇 hdruk.ac.uk/about-us/involvi…
@useMYdata retweeted
Discover how patient eye data from @Moorfields and @uhbtrust is empowering research through INSIGHT on our new web page.
- Follow the patient data journey
- Understand patient choices
- Find recent research breakthroughs
- Get involved
#datasavessight
🔗bit.ly/datasavessight
@useMYdata retweeted
🎉 Our Public and Patient Involvement and Engagement consultation has launched!
Join us at one of our online events and let us know what you think about our goals and objectives. You'll also get a £30 voucher as a thank you for taking part.
Register: hubs.li/Q02nyd7k0
ALT Join us at our online events.
@useMYdata retweeted
Update on NHS England's publication of contracts regarding procurement of the Federated Data Platform (FDP)
NHSE has said they intend to publish the contracts for the FDP and Privacy Enhancing Technology (PET) with fewer redactions in the next two weeks goodlawproject.org/update/nh…
@useMYdata retweeted
"We are just at the right time when we have enough power to start making really robust scientific discoveries" - our Chief Scientist Prof Naomi Allen.
📰 You can now read @TomWhipple's profile of UK Biobank in @TheTimes on our website ow.ly/1G8K50QJT3C
