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It’s summertime and PEDRI has been busy

Katie outlines what’s been happening at PEDRI these past few months and what to expect for the rest of the year.

30 July 2025 | Katie Porter, Project Coordinator at PEDRI

As we head into August, we want to pause and highlight the different events we’ve been involved in and a few new initiatives we’ve announced over the past month.

Good Practice Standards Frontiers Meeting

On 18 June, we hosted the PEDRI Good Practice Standards Frontiers meeting to celebrate the launch of the Good Practice Standards. Held at Wellcome in London, this meeting saw senior leaders and experts from different disciplines giving talks on public engagement in data research. You can read more about the event in our blog.

At this meeting, we launched:

‘From Standards to Impact’ Funding Call: In collaboration with Health Data Research UK (HDR UK) and Data and Analytics Research Environments UK (DARE UK), this fund aims to support Public Involvement and Engagement Practitioners working in data research organisations and research infrastructure programmes to develop a project that will embed the PEDRI Good Practice Standards in their work.
PEDRI Pledge: The Pledge outlines how the adoption of the PEDRI Good Practice Standards would change the involvement and engagement experience for the public. Teams and organisations adopting the Good Practice Standards can sign up to this public-facing Pledge.

"What I have learnt from PEDRI is that public involvement and engagement are central to trustworthiness, quality and value." Ed Humpherson, Head of Office for Statistics Regulation. A PEDRI Partner

Quote from Ed Humpherson (Office for Statistics Regulation) who spoke at the PEDRI Frontiers Meeting

Did you catch us at these events?

Map showing where the different events PEDRI has attended are located.

Patient Engagement Open Forum (12 June): PEDRI Strategic Lead, Doreen Tembo, was on the closing plenary session at the Patient Engagement Open Forum in Baveno, Italy. This multidisciplinary, international event is led by Patient Engagement for Medicines Development (PFMD), European Patients Academy on Therapeutic Innovation (EUPATI), and European Patients Forum (EPF).

UK AI Conference (23 June): PEDRI Partnerships and Operational Lead, Samaira Khan, hosted a public panel session at the UK AI Conference in London about the importance of public involvement and engagement in AI research.

Use MY Data Patient Data Day (24 June): PEDRI was a proud sponsor of the Use MY Data Patient Data Day. Both Doreen and Samaira facilitated an Equity, Diversity and Inclusion (EDI) workshop on behalf of the Centre of Ethnic Health. This workshop focused on the importance of accurate and representative data, shedding light on the current inaccuracies and the broader implications for diversity and inclusion in healthcare research and delivery.

Public voices in AI webinar (26 June): Doreen sat on a panel for a webinar led by the Ada Lovelace Institute, Alan Turing Institute and UKRI-funded programme Public Voices in AI, where she discussed public involvement and engagement and public attitudes to AI.

Science festivals: We’ve also been busy attending science festivals across the country where we’ve talked with families and individuals about what data research is and why it’s important. The events we’ve attended are Byres Hub Community Day, Rochdale Science Extravaganza, and Merthyr Science Festival. We also spread the word of PEDRI via a stall at the Cancer Research UK & UCL Cancer Trials Centre Patient Engagement Day.

Panel session at the UK AI Conference (23 June)

What else has happened?

Theory of Change: We are developing a Theory of Change to illustrate the desired change PEDRI will have in the data research space and what we will be doing to achieve it. The Theory of Change will be posted on our website when available.

Webinars: We’ve hosted three webinars that delve into the Good Practice Standards in more detail. The first provided an introduction to the purpose of the Standards and how they were created. The second outlined the benefits of Equity Impact Assessments and how they can be used in practice, whilst the third webinar explored how we can lead with empathy in our data research conversations with the public.

New project involving young people: In May, we kicked off a project, in collaboration with Cancer Research UK, that will explore developing a national online platform to support the involvement of children and young people with lived experience of cancer in data research. Read our blog to find out more.

Content collaboration: We’ve been working with other organisations to create content to spread the word of good practice public engagement in data research. In a blog for Data Saves Lives, we shared the story behind the PEDRI Good Practice Standards. We also collaborated with Shayda Kashef from Administrative Data Research UK (ADR UK) to create a short video with tips for public engagement practitioners on how to support others in doing good practice public engagement and why it’s important.

Coming up later this year…

EDI roundtable: In September, we will be hosting an invite-only roundtable exploring what EDI should look like in the context of data research. This online session will bring together experts, practitioners and members of the public to shape PEDRI’s future priorities, tools and approach to embedding EDI in public involvement and engagement.

Follow-up roundtable on public engagement in Trusted Research and Secure Data Environments (TREs/SDEs): In November 2024, we hosted a roundtable that discussed the challenges, current practices and potential solutions for data researchers using TREs/SDE in when and how to effectively engage the public in their work. We will be hosting a follow-up consultation later this year to agree recommendations.

Evaluating the Good Practice Standards: At the Frontiers Meeting, Ester Bellavia (Good Practice Standards Lead) announced the development of a tool that will support organisations and teams in evaluating their public involvement and engagement activities in line with the Good Practice Standards. This will be launched towards the end of this year.

Upcoming webinars: We are continuing our webinar series exploring how you can use the PEDRI Good Practice Standards for public engagement in data research. We have a few more webinars planned for the rest of 2025, so keep an eye on our Events page for more details.