Introducing the International COVID-19 Data Research Alliance and Workbench
On 26 June 2020, the COVID-19 Therapeutics Accelerator announced a grant to Health Data Research UK to establish a new International Data Research Alliance and data analysis Workbench to support the rapid development of insights and treatments to combat the global effects of COVID-19.
The International COVID-19 Data Research Alliance and Workbench will provide an environment for focused collaborative research, matching high value data from many sources with cutting edge analysis to accelerate collaboration, discovery and development of insights and treatments to combat COVID-19, all with privacy and accessibility in mind.
Next Wednesday, HDR UK are hosting an online webinar to introduce the International Data Research Alliance and data analysis Workbench. The event is open to anyone and you can find out more and register using the link below.
Share your ideas on how we can put the UK at the forefront of data science
On 20 July 2020, Health Data Research UK and Lord Prior, Chairman of NHS England, are convening a discussion between current and future health data science leaders to consider this opportunity and to think about how we use lessons learnt to shape the future of health data science in the UK. The aim is to create a consensus statement that we will publish on our website. This discussion will be recorded and made publicly available after the meeting.
We would like to inform this important discussion by inviting people from our wider community – whether you are a patient, member of the public or a colleague in the NHS, academia, industry or charity – to submit your ideas and suggestions in advance. We will collate this input and share it as a paper to the attendees of the meeting.
COVID-19 quality of life and patient reported outcomes standards
As we move into a different phase, and given that we are now receiving questions from other countries also about this topic, we would be very interested to hear from anyone interested in, or currently involved in studies collecting measures of longer term outcomes and/or quality of life or patient-reported outcome or experience measures (PROMS/PREMS) in relation to COVID-19. There is increasing recognition of the need to evaluate long-term impact of COVID-19 infection in terms of morbidity, quality of life and PROMS/PREMS, but without widely applicable definitions and standards so there may be an opportunity to align how such outcomes are being defined and recorded across studies.
Please contact Neil Sebire to have your say.
GP patient data for pandemic planning and research (COVID-19)
Organisations can now apply to access GP patient data for COVID-19 planning and research purposes.
To support the response to the coronavirus outbreak, NHS Digital has been legally directed to collect and analyse healthcare information about patients, including from their GP record, for the duration of the coronavirus emergency period, removing burden on GPs. The GPES data for pandemic planning and research (COVID-19), which is supported by the BMA, RCGP and the National Data Guardian, is collecting a defined set of information from GP practices in England on a fortnightly basis. This data will be held securely by NHS Digital.
Organisations should now apply for this data directly, rather than approaching GP practices or GP IT system suppliers. Please note: this data can only be used to support the nationwide response to coronavirus through planning and research and will not be released for any other purpose.
Tweet of the week
This week’s tweet of the week comes from Pete Wheatstone from DATA-CAN, the Health Data Research Hub for Cancer. He draws our attention to OneLondon Local Health Care Record Exemplar (LHCRE) who published their report ‘Public deliberation in the use of health data’ which explores the diverse views and insights that came out of the OneLondon Citizens’ Summit held over two weekends on February and March 2020.
More information and tools
1. Submit your research question or project – we are calling on anyone with a research question for COVID-19 that requires health data to share your ideas via our online form.
Questions will be shared in our HDR UK COVID-19 Knowledge + Skills Matchmaker. We prioritise all of the questions using a transparent and objective process to identify the questions that most urgently need to access to data. Progress of the prioritised questions is reported weekly to the government’s Scientific Advisory Group for Emergencies (SAGE).
2. HDR UK GitHub repository – The HDR UK community is developing computer-based tools and methodologies to analyse and handle health data, including those that can help overcome the COVID-19 challenge. These are all shared in a central repository, which is open to the public, so that we can all learn from each other and build on each other’s work. They are shared in HDR UK’s area of GitHub
3. COVID-19 Slack channels – researchers and innovators looking to collaborate to use health data to address the pandemic can apply to join our dedicated Slack channels. Complete the form to register your interest in joining here.
4. Take a look at our Skills + Knowledge Matchmaker to see a full list of COVID-19 ongoing projects, or visit COVID-19 page to see the latest version of HDR UK’s strategy to support efforts to tackle the pandemic.