Latest news and events
What's happening in the patient-data world
Public webinar - Wednesday 30 September 2026 ❘ 13:30-15:00 ❘ FREE
Our next public webinar looks at the Single Patient Record (SPR). This is the latest in our series of public events focussed on the use of patient data and designed to bring together a wide range of voices under our strategy of positive engagement.
We know from use MY data Members that there is confusion about the role and purpose of the SPR which is leading to a loss of confidence in the use of patient data. The SPR is being conflated with the Federated Data Platform (FDP) and this has already led to opt-outs for research and planning and England. We do not want opt-outs to increase as a result of the confusion. We hope this webinar will bring clarity, transparency and above all, patient voices to the discussion.
Although the SPR is an England only initiative, our webinar will have a UK-wide focus. We will be hearing from the devolved nations about their own work to unify patient records and what England can learn from their experiences.
Read our Position Statement on the SPR here
Public webinar in partnership with Understanding Patient Data.
Tuesday 21 July 2026 ❘ 10:00-11:30 ❘ FREE
New polls commissioned by Understanding Patient Data reveal what people feel about patient data use right now. This webinar will share the latest findings on public attitudes to NHS data use, and how they vary depending on purpose.
How comfortable are people with their own data being used? What concerns do they have? And crucially, how has recent media coverage shifted support for patient data use, including people’s likelihood of opting out? Are negative data stories in the media really outnumbering positive ones, or are positive stories simply failing to reach wider audiences?
If you want to understand how public attitudes to patient data are changing, what is driving those shifts, and why they matter, this webinar is for you.
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NPaDD 2026 - Watch now!
If you missed our National Patient Data Day webinars, or would like a recap of the day's highlights, you can now watch recordings of both sessions.
One day, two webinars, and a host of distinguished speakers from across the patient data world - including, Dr Nicola Byrne, Jabeer Butt, Dr Melanie Ivarsson, Professor Mark Lawler, Layla Robinson and Anna Steere.
The Health Data Research Service: what does £600m of Government and Wellcome Trust money get you?
How can the NHS benefit from patient data and not be ripped off?
We are very pleased to announce that the Cancer Research UK (CRUK) grants panel has renewed our funding for the next four years from April 2026. We are hugely grateful to CRUK for its continued support and vote of confidence in our work. This significant funding ensures that we can develop and extend our output and representation on behalf of ALL patients and disease areas and strengthen our efforts to influence better use of data across the UK.
CRUK’s Matt Howard Murray - Public Involvement Lead (Research Data Strategy) - said:
“Cancer Research UK is delighted to continue our support for use MY data over the next four years. use MY data has established itself as the pre-eminent trusted patient voice around patient data and has a growing track record of effective advocacy, policy change and strategic advice to the research community across a number of conditions, including cancer. Over the next four years we look forward to seeing use MY data deliver even more impact for patients across the UK.”
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use MY data’s position on the Health Data Research Service (HDRS)
use MY data is offering our services to the HDRS, to Wellcome Trust and to the Government, to make sure that patients are involved from the outset in planning, describing and promoting the potential benefits of the HDRS, the processes and the safeguards, and in developing a robust, comprehensible, clear and open transparency framework to retain public trust.
Championing patient voices at National Patient Data Day 2025
“Where else could I as a patient get the chance to sit next to Ming Tang and bend her ear?”
“I am not sure how it could be bettered; for an inaugural event you have a set a very high bar.”
Over 200 delegates - use MY data Members, patient-delegates, policy makers and researchers from around the UK gathered in Leeds on June 24th for the UK's first ever National Patient Data Day (NPaDD2025). This was a health data conference with a difference, one where patients set the agenda and led the discussions and where delegates and speakers met as equals.
use MY data in the Financial Times
“I naively thought that the NHS, being a national organisation, would have access to data just like a bank or building society.”
use MY data Member David Snelson told the FT how he navigates the NHS's maze of systems for collecting and sharing the patient data required to manage his care.
The week’s patient data news straight to your inbox
Our must-read weekly newsletter, exclusively for Members: Patient Data & Engagement Roundup brings you the latest patient data stories and PPIE opportunities direct to your inbox every Thursday.
What readers say about Patient Data & Engagement Roundup
“The most useful thing I receive in my inbox every week.” - Associate Member
“Just to outline how useful these are to me…. I sent snippets from your roundup to…five different teams and posted one [story] on our general Slack channel because it’s so relevant. These are great!” – Associate Member
“I just wanted to tell you how useful these newsletters are” – Associate Member
“Yours is certainly the best newsletter in the health-data field” - Member
“Another informative missive. Thank you!” - Member
View sample newsletters here and here.
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