Data is all around us. It’s used throughout our lives, from records of our birth to information about our education and the environment we live in. By working together, we can use data to benefit the public.

Research that’s conducted by using data can improve the lives of families across the UK. When it’s used responsibly it can lead to better healthcare, education, and more, to benefit you and your children. Interested in learning more about data? Keep reading to find out about some ways data is used, how it could impact future families, and how you can get involved to shape future research.

Find out more about the ECHILD project on their website.

How has data research improved people’s lives?

Data is often used in research, but does it truly make a difference? Take a look at the stories below to learn more about the impact that data research can have on the lives of families across the UK.

Gay couple formula feed their baby

What does data say about babies fed with formula milk and their future school results?

UCL research compares modified and unmodified formula to see if the type given to babies can affect future education.

What did the researchers find?
Mother and Baby at hospital

How data is being used to try and keep babies with their mums

No mother wants to see their baby being taken away, but research could help to stop that. New Research suggest guidelines to improve support for Mums and keep them with their babies.

How data is supporting keeping babies with their Mums

Research calls to prioritise early years to reduce childhood inequalities

A recent study compared data before and during the pandemic. It found the gap in childhood inequalities was increasing, and likely made worse, by the pandemic.

Childhood inequalities worsened by pandemic

Including Children and Young People in Data Research

Data isn’t just collected about adults, it includes children too. ADR Scotland piloted directly engaging children and young people to learn about their thoughts on data access and use.

See how ADR Scotland are engaging children
Parent caring for baby in hospital cot

Bringing real-time improvements to newborn care

The National Neonatal Research Database is an award-winning UK-wide dataset. Neena Modi – a professor whose team developed the database – talks about the impact it’s having on healthcare.

Read Nina's Blog

Using health data to understand children's education

The ECHILD project is a study run by University College London. It joins existing health, education and social care information for all children in England for the first time. Find out why this matters.

ECHILD Project

What is data research?

Data research uses data from routinely collected records from public services. These records about you, such as health or educational records, are usually used to keep track of how we use a service, such as your GP using your health records to check past illnesses. When anonymised, these records can be used for research as well, to help develop ways to improve people’s lives in future.

The use of you and your family’s data is a privilege and important responsibility. Keeping this data secure is the top priority. It’s always de-identified. This means that personal details, like your name or address, can’t be traced back to you. Researchers go through significant approval processes to gain access. Only people conducting research for the benefit of the public will ever be allowed to use the data.

There are lots of different types of data collected, but what are they and why are they useful? Take a look at these summaries below.

Type of data and how they're used

  • Health records are data which is collected in relation to a person’s health. It could include any of the following information:

    • Health conditions
    • Information relating to maternity and children,
    • Quality of life
    • Causes of death

    Health data can be found in a number of different places, including:

    • Patient health records
    • Studies about the health of groups of people
    • Data from blood or tissue samples
    • Imaging data
    • Data from health and fitness devices

    Every day, large amounts of health-related data (known as datasets) are generated. This could be by the NHS and other health and care services, or from other sources, such as academic studies and research. Some of these datasets come from general information about local or national populations, like the number of babies being born or how many people are admitted to the hospital on any day.

    Other types of data are more personal, such as individual medical records or scans. However, even personal datasets are kept de-identified in research. Your information will only be linked by a number. It’s not attached to you or your family’s names.

    If you’d like to find out more about health data, visit:

    Health Data Research Explained

     

     

  • Administrative data is information created when people interact with public services, such as schools, courts, or the benefits system. All this information is collected together and stored by government departments.

    These public bodies, including government departments and other public services, keep records of interactions with people, in order to:

    • Enable them to carry out their day-to-day work
    • Keep providing services effectively
    • Monitor and improve their performance

    However, access to this data can also be vital for research. Administrative datasets include information on everyone who comes into contact with public bodies. It can help to create a far more accurate and comprehensive picture of UK society than is possible without it.

    Each administrative dataset can give us a snapshot of how a service works. However, the greatest benefits from the use of administrative data for research come when data created by one public body is linked to that from others. For example, data on children’s health could be linked to educational records to see if there is any impact of certain health conditions on learning.

    If you’d like further information on administrative data, take a look at:

    What is administrative data?

  • Environmental records include any data that gives us information on the environment we live in. That could be anything about our livelihood, including the:

    • Country or region we live in
    • Type of house we live in
    • People we live with
    • Local amenities nearby

    By understanding this information and linking it to other data, such as administrative or health records, we can learn about how it impacts other aspects of life. We’ve already started seeing answers to some of these questions thanks to this data, including the impact of second-hand smoke, or pollution levels, on health.

How to get involved

As a parent and member of the public, you and your child can get involved with data research to shape how data is gathered and used. Getting involved is for everyone. No matter what your views are, or whether you’re unfamiliar with data, researchers across the UK want to hear from you.

What does getting involved look like and how does it make a difference? One great example is the inclusion of maternity service users in a recent study. This involved their input to help create a new dataset and develop research questions. Maternity service users also helped to make sure the analysis of the data collected was relevant to other service users.

Involving the public in data analysis

If you’d like, you can get involved in research right now. Take a look at some of the great opportunities below.

  • HDR UK Voices is a network of people interested in influencing and shaping the work of HDR UK and its partners. If you join, you can get involved in any of the opportunities available. By joining, you’ll help make sure that their work has the trust and confidence of patients, public, and practitioners.

    How much you choose to get involved and what you get involved with is entirely up to you. As they grow the number of opportunities available, they’ll help you find the opportunity that best fits you.

    Join HDR UK Voices

  • ADR UK (Administrative Data Research UK) is a programme funded by the Economic and Social Research Council, part og UK Research and Innovation. It’s transforming the way researchers can safely access public sector data for research that aims to improve people’s lives. ADR UK’s research falls into eight themes, including children and young people, crime and justice, health and wellbeing, and more.

    ADR UK is committed to ensuring public engagement is embedded throughout the research process for all of their funded projects. To find out more about their public engagement work, visit the link below.

    How do we work with the public?

    If you would like further information or to get involved in current opportunities, please contact hub@adruk.org.

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

    If you have any questions, would like to set up a group, or register your interest in joining, email DARE UK at enquiries@dareuk.org.uk.

  • A new project, called the Kids’ Environment and Health Cohort plans to set up a new national data resource. It will allow researchers to examine how local physical and social environments influence children’s health and schooling across England. It’s funded by ADR UK (Administrative Data Research UK) and led researchers from by University College London, in collaboration with London School of Hygiene and Tropical Medicine, and City, University of London.

    To date, they’ve worked with the Young People’s Advisory Group and the Parents’ and Carers’ Advisory Group at Great Ormond Street Hospital. Over the next few months, the Kids’ Environment and Health Cohort is looking to engage with new public groups as their project develops. Keep an eye on the article below for any future opportunities in the study that might turn up for you.

    For more information about getting involved, please email kenvh-cohort@ucl.ac.uk.

How is personal data kept secure?

Your data in action logoPersonal data contains information that can identify you and your family, such as names, addresses, phone numbers, emails and more.  The use of you and your family’s data is a privilege and important responsibility. Personal data is protected by the General Data Protection Regulation (GDPR) and the UK Data Protection Act 2018.

Across all the records used and highlighted on this page, personal data is de-identified. That means all personally identifiable information has been removed. However, this data can still be sensitive once it has been de-identified, particularly if there is potential for re-identification when used with other data.

If data is ever re-identified it is only done so by a select group of people who have had the proper training and experience to be trusted with this data. As soon as two sets of data are linked, it is de-identified once again and the personal information is removed. If you have any questions about the use of any of the data described, please get in touch with our team at pedri@hdruk.ac.uk

ADR UK
Health Data Research UK (HDR UK)
Office for National Statistics
DARE UK
NHS England
Research Data Scotland