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Going forward with the sharing of anonymised patient data will require “ongoing conversation with the public” after the government scrapped its controversial Care.data programme, the UK Healthcare Show was told this week.
Martin Severs, who sits on national data guardian Fiona Caldicott’s panel, said the government needed to demonstrate its “trustworthiness” before moving forward with the use of patient data for indirect care.
Severs, who was a member of Caldicott’s panel conducting the review on the use of consent and opt-outs for data sharing, said “nothing will change” or move forward until the public had been consulted properly.
The government has accepted the report’s recommendations in principle following its decision to scrap Care.data, which aimed to extract anonymised patient data from GPs to put on a central database held by NHS Digital.
Its public consultation on data sharing closed earlier this month, but Severs said: “Nothing changes yet.”
“An ongoing conversation with the public is needed,” he said. “Even when the government decides what to do, the conversation needs to continue. This isn’t a quick fix – this is a relationship with the public.”
Read more about data sharing in the NHS
- Tim Kelsey, the driving force behind the Care.data project to set up an NHS patient records database, has quit – but what does his departure mean for the troubled programme?
- Sharing healthcare data could deliver better care for patients, but people must be allowed to assess the benefits and risks themselves, says Caldicott.
- The government decides to shut down its troubled Care.data programme as Fiona Caldicott launches new opt-out model for the sharing of patient data.
Nicola Perrin, who heads an independent taskforce looking at patient data and improving the conversation with the public, said there was also a need to educate clinicians.
“We need to talk to clinicians, not just patients, so they understand why data is used, to build patients’ trust,” she said. “Clinical engagement is key to build trust among the public.”
Perrin, who is head of policy at the Wellcome Trust, said people were “largely unaware of how their data is used in the NHS, even for direct care”. She added that if people had only “little bits of information”, their concern increases.
“Care.data got us right to the very peak of concern,” she said. “There was little information, and not enough about why and the safeguards.” ..........................................................................