Happy New Year!
In 2018, HDR UK made a great start getting initial funding, setting out our strategy and getting the right people in place. We are clear on what needs to be done: set up the infrastructure to make data accessible for research, make it attractive for the best people to work in health data research in the UK, and get these people working on the biggest challenges that the UK’s health data can unlock. Now, in 2019, we need to make it happen.
Getting stuff done is the really interesting part. It throws up fascinating questions and problems to solve, such as:
– How do we get data sets of all shapes and sizes easily accessible for research and innovation?
– How do we align the governance processes for accessing the data so that we, the public, can trust our data is being used well?
– How do we encourage the private sector, academia, NHS and charities to work together to get real improvements now, and generate value for the UK in the long term?
– How do we get 1000s of people working as health data scientists in the UK?
As we are answering these questions, we’re looking for where others have already started on related work and have been talking with a wide range of organisations including the National Cancer Registration and Analysis Service, NHS Scotland’s Public Benefit and Privacy Panel (PBPP) process for data request approvals, NHS Digital, NHS England, Biobank, Genomics England, the Evidence-Based Medicine DataLab and many, many more people in workshops and events.
It’s also interesting to understand how questions like these have been solved in other environments.
For example, I recently visited Chatuchak Market in Bangkok. Chatuchak is the World’s Largest Weekend Market, with over 15,000 stores, 200,000 visitors per week, 26 sections and located over 35 acres.
The market has some simple principles in place to serve a wide variety of buyer and seller needs: standardised stall size, product categorisation, regular and easy to navigate access routes and a good map. As a buyer all you need is to be really clear on what you are looking for. It was fascinating to see the physical manifestation of the principles behind on-line models such as Amazon. As we work through how to make the health data available and accessible, we’ll draw on these and other examples to create the world’s largest health data alliance.
In 2019 we are aiming to make a big step forward in making the UK the best place in the world for health data research. What we are doing is new and ambitious, we will make mistakes, and we will learn as much from these mistakes as we do from our successes.
If we don’t make mistakes, maybe this is a sign we are not getting enough done. It’s certainly going to be an interesting year. Some of you reading this are already part of this endeavour, and for those of you who would like to get involved, please get in touch Caroline.firstname.lastname@example.org
Image: © Antoine FLEURY-GOBERT / Wikimedia Commons
Changes in preterm birth and stillbirth during COVID-19 lockdowns in 26 countries
16 October 2023
This paper by Calvert et al was selected by the HDR UK Impact Committee as an Open Access Publication of the Month.
Register by 18 October 2023
BHF Data Science Centre Webinar: October 2023