Care.data's a good thing? Tell us WHY, thunders watchdog
Patients need more info before letting world+dog read their med records
Patient concerns over the delayed NHS Care.data scheme must be addressed if the controversial plan to share GP records is to proceed, an independent watchdog has warned.
The report by the Independent Information Governance Oversight Panel (IIGOP) said clarity on policy and communications is "absolutely essential" for gaining public and professional trust in the Care.data programme. "This seems to be the area of most concern," it said.
The number of questions identified by the report illustrates the extent to which the NHS fell short in addressing patient concerns when it originally announced the scheme earlier this year.
The IT programme to connect records to the Health and Social Care Information Centre was planned to be rolled out in spring 2014. However, following claims that the NHS had failed to properly consult on the scheme, it now looks to have been delayed by at least one year while the much-scaled back pilot programme is completed.
In order for the scheme to proceed the Pathfinder programme must pass seven tests that demonstrate how patient data will be shared under the scheme, including whether people have "sufficient understanding of the scheme."
Other issues identified by the report include questions around the safety of data, patient quesions over the purpose of the scheme, and how GPs can meet their legal responsibilities to comply with the Data Protection Act.
In conclusion, the report said: "The National Data Guardian and IIGOP thinks that it would be reasonable to proceed to a data extraction in the Pathfinder areas once the Care.data Programme Board and other national organisations have provided satisfactory answers to the questions [outlined]."
The IIGOP will deliver a report to the Care.data programme board this week.