As the national institute for health data science, Health Data Research UK is working to unite the UK’s health data to make discoveries that improve people’s lives. Increasing access to health data in all its forms – from patient’s health records to genomic data and biomedical information – will enable researchers and innovators to better understand diseases, find new cures and treatments, speed up drug development and give people faster access to more personalised medicines. NICE provides national guidance and advice to organisations in the health and care system to improve health outcomes for patients and the population. Traditionally this decision making has been based on published evidence and NICE is now starting to embrace a broader range of data and applied analytics.
By joining forces, the two organisations can identify and act on opportunities where health data can be better used to support the health and care service to improve outcomes for patients and to do this more efficiently.
Together, NICE and Health Data Research UK will support training in health data science to ensure that health and care professionals have knowledge and skills to be able to use and apply health data and technologies. The organisations will work together to involve patients and the public in these joint initiatives and ensure that data is used responsibly and ethically.
Caroline Cake, Chief Operating Officer at Health Data Research UK, said: “We are delighted to be forming this partnership with NICE, which comes at a time when the health and care sector is experiencing a rapid increase in the use of emerging digital tools. We are committed to deploying NICE’s expertise into health data science to ensure that the NHS and its patients reap the benefits from these new tools and from data research.”
Professor Gillian Leng, deputy chief executive and director of health and social care at NICE, said: “This partnership will be key to establishing a learning health care system in the UK, facilitating the feedback of evidence from practice into the guideline development process. We are looking forward to working with HDR UK on a range of initiatives that will have a real impact on outcomes in health and social care.”
Angela Coulter, non-Executive Director at NICE and Public Advisory Board Chair at Health Data Research UK, said: “This is an important partnership as both organisations share the ambition to use health data for the benefit of people and the health and care system. I am so pleased to see the strong focus on involving patients and the public and look forward to supporting the plans as they develop.”
Update January 2020
NICE is seeking to increase and extend the use of data such as electronic health record data, ‘real world’ and other relevant data collected outside of the context of traditional trials in the development and evaluation of its guidance.
It has set out its ambitions in a ‘Statement of Intent’, so that stakeholders and interested individuals can see what we they are proposing to do in the future.