We recognise the world of data science can be complex and confusing, with messages and processes that are not always clear. That’s why we are committed to making sure everyone has the opportunity to get involved and help shape health data research in the UK.

We are pleased to invite you to share your thoughts on our draft Patient and Public Involvement and Engagement Strategy 2024-2028 which outlines our vision for involving you – the community – in our work.

We aspire to improve transparency, foster public trust, and promote shared decision-making throughout the research process. By incorporating the perspectives of patients, carers and the public, we aim to make sure health data research benefits everyone.

Our goals

We have developed some ambitious goals to ensure your voices are at the heart of everything we do. You can read about them here in our Patient and Public Involvement and Engagement Strategy consultation document 2024-2028.

We want to hear from as many people as possible to ensure our strategy meets the needs of our diverse communities.



If you need any of the supporting documents in another language or another format, such as easy read, large print or audio, please email: HDRUKStrategy@wearestand.co.uk

Dates of consultation

This public consultation will run until 21 April 2024. During this time, we will have a number of opportunities for people to have their say.

Have your say

We are inviting patients, carers, the public, and anyone from across the UK to give their views on our draft Patient and Public Involvement and Engagement Strategy 2024-2028.

There are a number of ways you can get involved:

  • Complete a short online survey

Please take part in our online survey to give us your views on our draft PPIE strategy

  • Join an online discussion

Four online events have been arranged to capture feedback from patients, carers, the public and our wider stakeholders across the UK. These have now taken place.

These sessions were facilitated by Stand, an independent organisation supporting HDR UK with our consultation.

  • Voluntary and Community Sector organisations

We are working with a number of voluntary and community sector organisations to run a series of focus groups with their members and communities to gather their views on the draft PPIE strategy.

  • Stakeholder interviews

We are conducting a series of one-to-one interviews with some of our key stakeholders and partners to get their in-depth views of our draft PPIE strategy.

Contact us

Contact us on social media:

You can write to us at: 

240 Blackfriars Road

Email us with queries about the consultation and how to get involved: HDRUKStrategy@wearestand.co.uk

Call us: 0191 535 5881

Thank you for your interest in our consultation. We look forward to hearing your views.