Patient and Public Involvement Opportunities

  • This Strategy, ‘Data saves lives: reshaping health and social care with data‘, sets out the Secretary of State’s vision for how data will be used to improve the health and care of the population in a safe, trusted and transparent way.

    It provides an overarching narrative and action plan to address the current cultural, behavioural and structural barriers in the system with the ultimate goal of having a health and care system that is underpinned by high quality, readily available data. It marks the next steps of the discussion about how we can best utilise data for the benefit of patients, service users, and the health and care system.

    The strategy is being published in draft format to enable full and open engagement on the commitments made within it, before publishing a final version of the strategy later in 2021.

    We are gathering feedback via an online survey, which will close at 5pm on Friday 23 July. To complete this survey, click this link.

  • This meeting will provide an opportunity to hear about an exciting new UK Research and Innovation (UKRI) Digital Research Infrastructure programme that aims to deliver a secure, flexible and interoperable infrastructure for connecting and analysing sensitive research data to support novel world-leading research.

    It will introduce the scoping of the first phase of the programme – ‘Design & Dialogue’ – which will take place over the coming year and involve extensive engagement with the research community, funders and public representatives to co-design standards and gather detailed technical requirements from across disciplines.

    You will also hear about the planned sprint projects, which aim to uncover and test early thinking around use cases, governance, ethics and technical feasibility required to deliver a UK-wide data and analytics research infrastructure.

    Members of the public are welcome to join this very first webinar about the programme and we value suggestions on how we can involve people from the start.

    This first phase will be delivered jointly by Health Data Research UK and Administrative Data Research UK working in partnership on behalf of UKRI.

    Find out more on the main event page here, or register to attend via Eventbrite here.

  • In the UK there over 3 million people in the UK who have participated in one of around 50 different longitudinal population studies (LPS), for example in a cohort in survey that collects information repeatedly over time. The wealth of different types of information collected from participants – from their genes and the way they choose to live, to their local environment, to what they think and feel, and the services they access – creates extremely valuable research resources that can be used to understand many of the big societal and global challenges facing the world today, from child poverty, health, disease and wellbeing, changing demography, globalisation and inequalities.

    Population Research UK is a new research initiative that will seek to bring the data from individual longitudinal research studies together and make them more findable and accessible to research, and benefit from the additional research power that comes from combining and linking data. HDR UK are scoping the development of PRUK on behalf of the Economic & Social Research Council, Medical Research Council and Wellcome.

    After an initial consultation earlier this year on the needs and opportunities of UK longitudinal population studies, we would like to go through the proposals and recommendations for PRUK with you to find out more about the public perspective.

    This will be a 1 hour and 30-minute workshop on Tuesday 17 August 2021, 1.30pm – 3pm, where we will explore your ideas and thoughts around PRUK and what you believe to be the benefits to the public from this project. You do not need to have an understanding of longitudinal population studies, but an interest in them and health data research would be useful.

    To register your interest in attending this workshop, please complete this Eventbrite form by 5pm 10 August 2021. We will be in touch by Friday 13 August to confirm whether we have been able to allocate you a place and to share any pre-meeting materials you may need to give you some more background information.

    If you would like to ask any questions about PRUK or this workshop, please email Alice (Public Engagement and Involvement Officer, HDR UK, Alice.Dowden@hdruk.ac.uk) and Sinduja (Public Engagement and Involvement Manager, HDR UK, Sinduja.Manohar@hdruk.ac.uk).

  • The Secure Anonymised Information Linkage (SAIL) databank focus on anonymising and linking routinely collected data to help develop health and care research. To help them build and sustain public trust their Consumer Panel play a key role. As well as providing ideas on engaging with the public they advise on bids through approval processes, review information for a lay audience, offer advice on how to recruit reps to study steering groups and much more.

    The Consumer Panel have an ongoing recruitment process and are looking to ensure they have a range of people with different perspectives involved. If you’re based in Wales and are interested in getting involved, you can get in touch with the Swansea based team at dsbconsumerpanel@swansea.ac.uk

    Find out more and get involved

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 feedback@hdruk.ac.uk or call 07597 552671.

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 enquiries@hdruk.ac.uk

Visit our events page

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