Patient and Public Involvement Opportunities

  • In April this year, it was announced that Cathie Sudlow, HDR UK’s Chief Scientist and Deputy Director, has been commissioned a UK health data landscape review. This commission was received from Professor Sir Chris Whitty (the Chief Medical Officer for England and UK Government’s Chief Medical Advise), Dr Timothy Ferris (the NHS England’s National Director of Transformation), and Professor Sir Ian Diamond (the UK’s National Statistician).

    The official announcement has now been shared with the public on the HDR UK website, where a call for public consultation has also been made available. This consultation marks the first step of a review process. It aims to be as inclusive and diverse as possible.

    Please consider taking part in this consultation to provide your individual thoughts and opinions, while we plan activities to further involve patient and public partners and stakeholders in the review. This consultation closes at 5pm on Friday 30th June 2023.

    By completing the online form, you have the opportunity to express your views on:

    • The use of health data in research and healthcare.
    • Barriers and potential solutions
    • What data should be made available now to support advancement in research and healthcare.

    Complete the online form

  • PEDRI are very excited to announce the launch of their open public consultation on their draft Public Involvement and Engagement Best Practice Standards for the use of data for Research and Statistics.

    These standards have come together after nine months of work. The standards have been drafted after a review of existing involvement and engagement standards and with input through public workshops, and wider consultation with members of the public and the involvement and engagement community.

    While they are proud of the work done to develop the draft standards, it is not the end of their development. Now, they’d like to hear from you. They hope you are able to take the time to read the draft standards and provide your feedback by Friday 30th June 2023.

    Take the survey now

  • The British Heart Foundation Data Science Centre (BHF DSC) want to hear from you!

    Data collected by wearable devices and/or apps such as fitness watches may be able to spot if you are likely to develop heart disease. This information can be used by researchers and doctors to improve heart and circulatory health.

    BHF DSC are developing a new app to better track heart health, and they need your help! To design the app, they would like to know what data you would be happy to share, as well as your thoughts on data privacy. Share your views anonymously.

    Have your say

  • DARE UK (Data and Analytics Research Environments UK) is a programme funded by the UK Research and Innovation (UKRI) to design and deliver a coordinated and trustworthy national data research infrastructure to support cross-domain research for the public good.

    Recently, they’ve begun looking for research professionals, members of the public and more to help set up community groups to unite people in data across the UK. The groups can include:

    • Interest Groups
    • Working Groups
    • Communities of practice

    The groups will invite members to have their say on work affecting how personal data is accessed and managed. if you’d like to find out more, visit the link below.

    DARE UK Community Groups

  • Why did you choose to get involved in health data research? Why does health data research matter to you and what do you want us to achieve in future? If you have answers to these questions, you could help!

    We want to show that anyone can get involved in health data research if they want. To do that, we want you to share your story so that we can showcase the variety of different views, opinions, and thoughts in our HDR UK Voices community.

    You can get involved in lots of different ways! You could simply provide a quote and an image of yourself or you can do more. You can have a one-to-one interview with a team member, be photographed by a professional photographer, or take part in a video.

    Are you interested in taking part? Complete the form below to let us know.

    HDR UK Stories – Register Interest

Diversity and Inclusion

At HDR UK, we embrace diversity and all the ways we are different – visible and non-visible alike and believe diversity and inclusion fortifies each part of our Institute. We are committed to creating and running inclusive opportunities for patients and members of the public to get involved and truly engage with our work. We are actively building relationships with a variety of networks and populations to enable us to shape our work through a diverse and representative range of views and ideas and ensure the opportunities are run in a way that meets the needs of people we are looking to involve.

Health data affects everyone and we want to encourage everyone who has an interest in health data (including whether or not you are pro-access to health data) to get involved. If you have any questions or any ideas or suggestions on how we can improve the inclusivity of our patient and public involvement and engagement activities please get in touch at involvement@hdruk.ac.uk or call 07709 505 163.

Dr Amitava Banerjee, Associate Professor in Clinical Data Science:

“Research and healthcare data starts and ends with patients and the public. In fact, to have the highest impact, patients and public have a vital role to play at every stage.”

Have an opportunity to promote?

If you’re working on a project that would benefit from patient and public involvement and engagement that you’d like us to help promote, get in touch at involvement@hdruk.ac.uk.

Upcoming Events

Find out about our upcoming events and how you can get involved!

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