Current data protection guidance and regulations are contradictory and not conducive to effective patient care according to a new discussion paper published by the independent CCIO and Health CIO networks.

The CCIO and Health CIO Networks discussion paper:’data sharing and data protection in healthcare’, considers the sensitive issue of the use of patient information, and was initially written in response to recent controversies over the data sharing model in TPP’s widely used SystmOne software.

The Information Commissioner’s Office in March announced an investigation into the TPP model over concerns it may contravene principles 1 and 7 of the Data Protection Act.

Members of the CCIO and Health CIO Networks drafted the paper based on online discussions and questions raised on their private community platform. A small working group then prepared the final discussion paper.

The paper addresses the issues and confusion around the regulation of data protection associated with data sharing, as applied to more broadly sharing patient records, within the sometimes contradictory current legal framework and guidelines.

The paper argues sharing data saves lives, and says clinicians are currently having to choose between the risk of non-compliance with the letter of data protection law or the danger of delivering sub-standard care to their patients.

“In my own view, I would rather be in the office of the ICO than in the coroner’s office,” commented Joe McDonald, CCIO at Northumberland, Tyne and Wear NHS Foundation Trust and chair of the CCIO Network.

“I think that’s the choice we face at the moment. Yes, we want better audit trails, yes we want citizens more in charge [of how their data is used], but in the meantime all information governance is imperfect.”

The CCIO and CIO Networks discussion paper: ‘data sharing and data protection in healthcare’, which is published today, calls on national bodies to create regulation which better reflects the information sharing that is now possible and desirable in healthcare.

Copies of the discussion paper are being sent to NHS CCIO Professor Keith McNeil and NHS CIO Will Smart.

Last year, Dame Fiona Caldicott published her third review of data security and information in healthcare. The government’s official response to it has been long delayed, however – most recently by the general election. The Conservative manifesto does promise to make good on a long-held desire to put the office of the national data guardian on a “statutory footing”.

Link to discussion paper