A move towards open data could add £216 billion to the UK economy by 2017, says a joint report by NHS England and OpenGovLab.
The report entitled 'A Blueprint for the Open Data Era in Health and Social Care' was published at the Health Datapalooza conference in the US last week.
The collaboration between NHS England and the Governance Lab at New York University recommends the NHS created an open data learning environment.
This will include setting up an open health data academy “soliciting calls for questions from the academic community, and posing challenges and offering prizes for the best uses of open health data” and share its failures and successes with everyone.
It identifies six domains that could benefit from open data: accountability, choice, efficiency, outcomes, customer service, and innovation and economic growth.
It says that if the UK collects and distributes more data, it will make it an “attractive destination for health research as well as health innovation.”
“Considerable evidence exists to suggest that open data can spur economic growth and innovation at both a national and regional level,” says the report.
“The Centre for Economics and Business Research estimates that the EU’s move towards more openness in data will create 58,000 jobs in the UK by 2017 and add £216 billion to the nation’s GDP.”
Commenting on the blueprint, Tim Kelsey, NHS England’s director of patients and information said there is an “urgent need” for the NHS to use better information to make decisions and investment.
“We know with scientific and medical research, the rate of discovery is accelerated by better access to data,” he said.
The report says that open data plays a crucial part in lowering costs, reducing fraud and increasing productivity. It says that “numerous examples exist in which public access to data has identified or could potentially identify significant cost savings.”
“In a recent study, a company called Mastodon C, based at the Open Data Institute in Shoreditch and working in conjunction with Ben Goldacre and Open Healthcare, analysed massive amounts of data on prescription patterns released by the NHS,” says the report.
“By examining regional variations, they were able to identify potential savings of £200m,” it adds.
The blueprint aims to suggest ways to enable a conversation about how the health and care system can maximise the impact of sharing open data to improve services, based on the proposals outlined in the report.
It says a major challenge is that there is “little understanding of whether and how” open data projects lead to positive outcomes such as economic growth, innovation, patient satisfaction, improved treatments, efficiency and accountability.
“One of the central goals of this paper is to establish a conceptual framework, or logic model, that can be used by researchers and programme managers to design their open data initiatives and then measure their impact,” says the report.
It also suggests engaging citizens and clinicians to shape the open health data programme.
However, the report also acknowledges that there are barriers to open data such as having relevant legislation in place, privacy concerns and making sure there are sufficient data and interoperability standards in place.
“Along with the opportunities, however, come certain risks. Open data is in many ways a “disruptive” phenomenon. Like all disruptive technologies, its implementation is likely to throw up several challenges and obstacles,” says the report.
It says that although “fully informed consent is not always possible, it is not desirable to return to a paternalistic model that takes away a patient’s ability or right to consent.”
“Any efforts to open data must be accompanied by strong disclosure and notification mechanisms to inform individuals and the public when data violations do occur,” says the report.
Kelsey said that over the coming months, he will listen to views from colleagues on “how we can take this forward and build an evidence base to improve outcomes for patients.”