Using data to build a bigger picture of people's needs
Katie Harron is Associate Professor at University College London
"When any of us use services, whether going to the GP, attending school or starting a new job, we create a record. These records are a really valuable resource for research. We can use data to help inform health planning, government policy and clinical trials. For example, linking information from babies who were born preterm, with later information from education, can help us to understand the particular needs of preterm babies, and how we can best plan services to meet the needs of these children.
"That’s the power of longitudinal data - data from every stage of people’s lives - we bring together different pieces of the jigsaw to get a bigger picture of someone’s needs, and every different piece of information that we can bring to the picture really helps. This allows us to support people in government to make informed decisions in a more joined-up way and to plan services in the best way possible, to allow people to really get the most out of their lives.
"The COVID-19 pandemic has really highlighted the need for timely, accurate data to support services such as the NHS to respond to the needs of the population. We need to build on that momentum. The work that we’re doing now, in terms of building bigger, better data resources for really high quality research, will pay dividends in years to come. We need to make it easier for government departments to share data and reduce costs to researchers applying to use the data. Ultimately, we need to keep talking to patients and the public, because public trust in how we use data and why it's important is really key. We have to carefully justify why we want to access data (and how it will benefit the public). We can never identify specific people in any data set (we only see codes and numbers), and our research platforms are completely secure and only accessed by accredited researchers. Letting the public know that and being completely transparent is really important. It’s crucial we weigh up the risk versus the benefits - the risk is tiny, and by sharing data the public can help us to improve care and services for every single person in the whole country."