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The Open data in the health sector report, which was commissioned by NHS England in 2016, has found that healthcare data is often fragmented and duplicated.
The report by Giuseppe Sollazzo in collaboration with Open Health Care UK, which looked at “the needs and experiences of people using open data about health”, said the healthcare sector should establish a single point of access to datasets to get rid of the duplication and varying standards.
Through interviews with a range of healthcare professionals, researchers, academics and government officials, the report found that the most “pressing issue” is the “fragmentation of data publishing locations and variation in standards across the health system”.
“The baffling array of data sources, combined with the complex structure of the NHS, creates confusion and extra work for almost anyone doing research, analysis, or building products and services using NHS data,” the report said.
One of the report authors, David Miller from Open Health Care UK, said in a blog post that one of the key problems emerging from the research was “the lack of data routinely used as part of clinical practice in the NHS”.
Gavin Jamie, a GP who was interviewed by the authors, said clinicians in general practice struggle to get access to data on hospital admissions.
The report also found that many of those interviewed often struggled to know where to look for data and turned to Google instead.
“Given that many of the interviewees should be considered expert users of data, often with a professional knowledge of the structure of the NHS, we are forced to consider this a structural failure of the publishing ecosystem in the health system,” the report said.
“A common complaint was, once again, that it is hard to identify the primary source of data. Some users still search for information on the old NHS Digital website.”
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The report recommends that the healthcare sector works towards a “single authoritative online point of access for datasets” and “proceed with a programme of reducing duplication in data publishing” to tackle the problem.
The authors argue that users aren’t necessarily just converned about the openness of a dataset, but that they are “interested in better understanding or explaining a particular domain within health”.
“Shared non-open datasets should be published using the same standards, metadata and discoverability mechanisms as open datasets,” the report said.
It also recommends that an “expert and reachable data support team” that covers the entire health system is established to build “strong links with the wider data ecosystem”.