Public Engagement in Data Research Initiative (PEDRI)

Part of our series of blogs examining topics in the proposed refreshed Code of Practice for Statistics, Professor Sir David Spiegelhalter, Emeritus Professor of Statistics at the University of Cambridge reflects on his experiences in the Infected Blood Inquiry and the importance of transparency around statistical uncertainty 👇 https://lnkd.in/d2c7z5dq

Curious about the role of health data and public involvement in kidney research? Throughout early 2025, Kidney Research UK and the UK Renal Health Data Research Network are teaming up to deliver webinars for patients and the public to find out how health data is used in research and the importance of public involvement. Find out more: https://lnkd.in/ertjpkcD #DataScience #PublicEngagement

A great read from Office for Statistics Regulation, making the case for feeling optimistic about data sharing and linking of government data in 2025. Not least because of the work of ADR UK (Administrative Data Research UK) in proving the value of this work and our collaborations with others, including Public Engagement in Data Research Initiative (PEDRI).

NEW RESEARCH📢 Today we're publishing the outputs from our project focusing on the experiences and perspectives of Gypsy, Roma and Traveller communities on the collection and use of ethnicity data in health services. The Gypsy, Roma and Traveller communities are known to face some of the most severe health inequalities in the UK. Although the need to better capture data on these communities is generally beginning to be better recognised, resolving administrative issues does not resolve other reasons for data inaccuracy and incompleteness for these communities, namely social exclusion and barriers in access to health and care services. 📰 The outputs of this research include a desk review that explores the concept of ethnic categorisation and how it applies to Gypsy, Roma and Traveller groups, as well as a full report of the community engagement work we conducted including surveys and focus groups. 👏 Thank you to all of our participants, advisory group members, and to University of Worcester and GATE Herts for partnering with us on this project 🔗Explore the outputs here: https://lnkd.in/e3yxfTda

I am part of the community reference group of the Co-Pro Futures Inquiry https://lnkd.in/e8wvtBuU , which was launched in December and is now asking those with experience of co-produced research to submit evidence by February 28th. Led by Beth Perry, Catherine Durose and Liz Richardson the Inquiry is looking for evidence on how to better facilitate genuine co-production between academics and members of the wider community, focussing on four key themes: fair funding, equitable partnerships, responsible metrics and negotiated ethics. Having myself just worked with Resolve Poverty on an evidence review for Joseph Rowntree Foundation (JRF) to identify research that has been co-produced with those with lived experience of poverty, I realised that a lot of research is presented as having been co-produced, but a closer look often reveals that involvement of participants through all stages of the research process is rare. This is because although the value of co-production is recognised, it can be difficult to achieve in a world where systems are not usually designed to support co-production. The inquiry has set out to change this by involving community partners, key stakeholders and research funders to identify practical solutions. This report provides further information about why the inquiry is needed and how it will work. Page 23 sets out concisely how to submit evidence and what sort of evidence the inquiry is interested in. You can still submit evidence until February 28th.

“Little things make big things happen and this is what I think has happened here.” In our new blog, Kirsteen Campbell from PEDRI partner, UK Longitudinal Linkage Collaboration, shares her perspectives on our recent roundtable on the role of public involvement in applications for researchers to access data. Read more: https://hubs.li/Q0300DBT0