Understanding Patient Data

The UPD team have had a whirlwind week at the OpenSAFELY symposium in London followed by the Data Saves Lives conference in Brussels! 🌎 We were pleased to present our poster on our recent What Words To Use project as an example of patient partnership through data 📰 #DSL5

📢Can you help us? 📰We're putting out a call for evidence to support a desk review of public and patient knowledge, understanding and perceptions of health data security and explainer resources. 📨Get in touch at hello@understandingpatientdata.org.uk by December 6th with suggestions!

On Tuesday, The Data (Use and Access) Bill had its second reading in the House of Lords. The Bill is not health-specific and covers a range of issues such as data protection, 'smart data' and digital verification, but what might it mean for patient data? UPD's Policy and Engagement Manager Emma Lagerstedt gives an overview, with a focus on proposed legislation on information standards in health and social care. Read more on our website 👇 https://lnkd.in/ew2E4rsr

What could a UK National Data Library look like? This is the subject of our new Technical White Paper Challenge with ESRC: Economic and Social Research Council. The UK public sector holds a wealth of data that could help scientific progress. But there are barriers to using this data effectively. Wellcome and ESRC are seeking technical visions and architectures which could make it easier for researchers to access public sector datasets, helping future science to thrive. Applications are open now, and the deadline is 6 December 2024. Find out more details about the challenge, including eligibility and the scope of proposals ⤵️ https://lnkd.in/eFks3UYa

Have your say on the future of health research We're running a series of workshops in December and January, to hear people's views about the future of health research with OpenSAFELY. The workshops are open to all, and we're particularly keen to hear from people in communities less involved in health research (eg. people from minority ethnic groups, on low incomes, or living with disabilities). Each workshop will take 2 hours, and will happen online. We'll pay attendees for their time. For more information, and to sign up, see our page on EventBrite 👇 Health and data professionals: please share widely with patient and community groups you're part of! Thank you so much! https://lnkd.in/eTGQaaXp

Today, UPD welcomes the publication of the #SudlowReview and were pleased to participate in the launch panel event🥳 📰It was also great to see our work referenced a number of times throughout the review 🔗Check out our full response to the review here: https://lnkd.in/e6yNcczj

📢 JOB ALERT! 📢 🤔 Could you be our next Head of Understanding Patient Data? 👋 We will sadly soon be saying goodbye to our current Head of UPD, Nicola Hamilton, who is moving on after nearly two years in the role. 🌟 We are looking for someone new to join and lead our UPD team, which has exciting future plans! Find out more here: 🔗 https://lnkd.in/ev5mZ_xA

Our Head Of, Nicola Hamilton, is looking forward to speaking at this event next week on data, AI and statistics as a digital public good 🗣️ Join us if you can!👋 https://lnkd.in/enY85xxs

📰It was great to see our joint evidence with NHS Confederation used in the recent inquiry into UK-EU data adequacy. 🔎Our evidence focused on the implications of losing adequacy status and the cost- benefit analysis of alternative approaches. 🔗https://lnkd.in/efv8RgAx

📢 New data bill introduced! Yesterday, the Government introduced the Data (Use and Access) Bill to the House of Lords. The Bill is cross-sectoral, meaning it contains a wide range of measures that apply to a number of different sectors, not just health. As highlighted in the press release announcing the Bill (https://lnkd.in/eu-EktYy), the Government plans to use the legislation to make patient data more transferable across the NHS - supporting Government plans to announce a single patient record – through improving standardisation of data. However, it is not currently clear how this will work in practice. The second reading (which will be the first opportunity for members of the House of Lords to scrutinise the Bill) has yet to be scheduled. UPD will share a more in-depth assessment of the Bill in due course and engage with its passage through Parliament. Read the full Bill text below 👇 https://lnkd.in/eK_EMh_a The UPD team wrote a blog about the last data bill to be introduced to Parliament (under the previous Conservative government). Whilst waiting for our assessment of the new bill, you can find this blog here: https://lnkd.in/ePFWjCjz