Big data could be the key to understanding patients with multiple medical conditions.
“I don’t believe you can deliver good healthcare without knowing what’s going on, and you can’t do that without good informatics,” said David Haslam, chair of the National Institute for Health and Care Excellence (Nice).
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Speaking during the keynote at the BCS National Health IT Conference (HC2014) in Manchester today, Haslam said big data is the key to the health sector learning more about patients with multiple medical conditions.
Haslam said care and medical education has traditionally been focused on the idea that a patient has a single condition. In practice, however, it is more common for patients in the UK to have two or more long-term conditions than just one – this is called multimorbidity.
He said huge amounts of research excludes patients with more than one problem because it becomes too complicated: “You get fantastically detailed and accurate results on a population of people that hardly exists.”
Haslam said big data could be a fantastic benefit to the health industry in understanding people who suffer from multimorbidity, adding that it would be “extraordinarily difficult to do without health informatics”.
There needs to be a paradigm shift in the NHS, from a paternalistic approach to patient care to a partnership between the clinician and patient. “Medicine needs to be done 'with' patients rather than 'to' patients,” he said.
You can't deliver good healthcare without knowing what’s going on, and you can’t do that without good informatics
David Haslam, Nice
Haslam said this can be encouraged through the sharing of data. He noted the Care.data and other NHS controversies have led to patients becoming worried about sharing their medical data, but Haslam has seen a trend towards patients voluntarily uploading data to websites, such as Patients Like Me in the US, to learn from other patients.
NHS England's national director for patients and information, Tim Kelsey, said the NHS would not have a future without the Care.data programme.
NHS England announced its plans to expand the collection of patient care data from hospitals to include general practices in January. The plans aimed to improve research on data related to disease and treatment patterns. But failures to properly educate the public resulted in the scheme being put on hold for six months.
Kelsey said the reason the NHS decided to delay the Care.data programme was to give the organisation more time to have these conversations, because it couldn’t guarantee that patient data would be used for the purposes of improving healthcare.
Legislation has recently reached the House of Commons which Kelsey said does provide the statutory guarantee that data would be used for this purpose.
“I think this is a turning point for a different kind of contract between us and the citizens of this country about a properly shared understanding of benefits and risk on the one hand of data sharing and the guarantees on the other about what the use of the data will be,” he said.