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The government of the United Kingdom (UK) has set up an alliance of leading academics and health data specialists, whose aim is to come up with best ways to design, use, collect, manage and analyze health data in a responsible way for clinical trials, medical research, and innovation.
In a statement, NHS Digital, one of the partners said the alliance, Health Data Research UK was inspired by the Global Alliance for Genomics and Health, the World Wide Web Consortium and the Human Genome Project. The partner said the alliance was bringing “together organisations and digital health leaders to mobilise the UK’s health data for science and innovation.”
Sarah Wilkinson, the Chief Executive of NHS Digital, said: “A dynamic partnership between the NHS, academia and industry is critical to create the necessary environment for the sector to continue to thrive and to maintain its status as a world leader.”
One of the alliance’s goals is to make health data more accessible, while improving data quality “in order to build a more innovative and efficient health and care system.”
Health leaders in the UK are concerned that, at the moment, only a fraction of the National Health Service (NHS) and research data is readily accessible to researchers. The new alliance is set to change that.
As part of making health data more accessible, the alliance will put in place a set of governance policies and standards to open up this information, while also ensuring that the data is safe, secure and only shared where there is an appropriate legal basis.
“Part of this work will see NHS Digital and Health Data Research UK agree on an approach to using data to better inform clinical trials and to design systems that allow data from across the English healthcare system to be accessible in real time,” a statement said.
One of the main areas of focus for Health Data Research U.K. would be to improve the speed and efficiency of clinical trials. This will see authorities reducing and removing the 70-day benchmark for clinical trials in favour of the publication of accurate performance data using a standard national framework.
The government will also provide a £37.5 million funding and a plan for a network of regional digital innovation hubs, which will provide expert clinical research data services, data analysis and sharing capabilities.
“This is part of a wider programme delivering on the government’s tech vision to reform the architecture of technology in the NHS and make it work better for patients, clinicians and researchers,” reads the updated Life Sciences Sector Deal 2.
This will be backed by a wide-ranging new policy package to support “uptake and adoption of innovation in the NHS and ensure the UK continues to be a world leader in health tech.”
The centerpiece of this drive to push for the adoption of innovation is going to be the NHS app, which will be launched in the autumn of 2019. The app is meant to help patients become more directly engaged in clinical research that is relevant to them by registering their willingness to participate and indicating their preferences for specific types of research.
The alliance hopes the app will help researchers access relevant data from the digital records of patients enrolled in research, reducing costs and improving efficiency, compared to conventional, labour-intensive methods. “Along with digitally-enabled recruitment, this would dramatically reduce the cost and speed of recruitment to and running of large-scale clinical studies, particularly for late-stage clinical trials, the most costly component of the drug discovery process,” the updated policy document reads.
In addition policymakers hope that within two years, the app can be a channel to provide participants with information about the research outcome of which they were part. Also, it is hoped that by 2021, the app will allow people to upload data from wearables and lifestyle apps, in a quick and secure way, in order to help improve NHS patient care through research.
Lord James O’Shaughnessy, the parliamentary Under Secretary of State for Health, was quoted saying: “Using health data for research has the potential to deliver solutions to the greatest healthcare challenges we face.”
The setting up of an alliance with a focus on data and digital goals was given a fresh impetus by the UK’s desire to redefine its place in the global life sciences industry following a vote to leave the European Union. Setting up the alliance is part of a roadmap for the UK to create new industries over the next two decades in the fields of early disease detection and genomics; digital technologies and data analytics; and in advanced therapeutics.