Upcoming EU Data Protection Ruling Gives Green Light for Sharing Patient Data across Health and Care Sector

Proposed changes to data protection under new EU legislation could provide a significant opportunity for further integration across health and care services and change the way that we deliver care to patients, according to the NHS European Office.

Nuffield Trust

The NHS European Office, part of the NHS Confederation, represents the NHS in the European Union and believes that the upcoming EU Data Protection Package will provide increased flexibility for staff to access medical records, as long as they have a legitimate reason to do so.

An announcement on the Package, which is designed to ensure a more harmonised approach to data protection and privacy across the European Union, is due in early 2016, however the final decisions are expected to be made this week. An informal decision has already been made on the 15th December.

Current data protection legislation makes it difficult for those outside of a regulated profession to access data. This put NHS professionals working alongside local authorities, social workers and charity staff in a difficult position when it came to sharing data. The NHS European Office, has been working to shape changes to the legislation to support greater innovation, research and integration in the NHS. The expected changes in the legislation will mean that those with a legitimate reason to access personal data could have the right to do so as long as national rules or legislation allow it. So while the common law duty of confidentiality remains, national laws and rules could make it easier and clearer for the health service to share data with other organisations in a more joined-up way.

The integration of health and social care, with housing and other services is one of the key issues for today’s NHS. According to the Nuffield Trust analysis released this month, just 3.6 per cent of patients took up over a third of bed capacity in hospitals last winter (1). The majority of these patients were frail and elderly. To ease pressure off hospitals there must be closer partnerships between hospitals, community services and social services so that we can improve the care that we deliver to older people in particular. The sharing of patient data is critical for allowing this process to happen.

Elisabetta Zanon, director of the NHS European Office, said:

“Integration is one of the greatest priorities when developing new models of care and data is a key element when it comes to putting this into practice.

“It is important that we alleviate the burden of data sharing across health and social care. We have worked hard to highlight the need for a more flexible legal framework, which could remove a critical obstacle to the provision of integrated care for an elderly population, often living with two or more chronic conditions.

“While it is vital to maintain confidentiality for personal data, the need for professionals to handle data more effectively and break down the information barriers to allow care to be delivered in a more effective manner has to be acknowledged.

“This will help in developing radical new ways to deliver services as well as support some of the digital projects which are bringing together hospital, GP, admin and audit data to improve delivery and help identify patients who most need health and social care support.”

The NHS European Office has also argued for a clear legal framework on appropriate use of personal data in health research. Critical medical discoveries, such as establishing the link between smoking and cancer, would not have been possible without using personal data. During negotiations, disproportionate limits on the use of personal data in health research were proposed that would have threatened crucial studies across Europe. However the NHS European Office, working in partnership with a group of leading non-commercial research organisations, has been able to push for a legal framework which ensures appropriate and meaningful safeguards and strikes the right balance between protecting the interests of individuals, while enabling research that benefits us all.

Despite many positive changes achieved, one negative change envisaged by the new legislation is that all information should be provided free of charge to the data subject (patient), meaning the NHS could be financially burdened.

Currently the NHS can charge an administrative fee for ‘subject access requests’ where an NHS organisation provides a copy of a person’s medical record.

Although there are no centralised figures on this, it is estimated that a medium-sized district Trust can receive around 50 requests every week. The acute sector could potentially be receiving over 400 000 such requests each year. Under the new rules this information will have to be provided free of charge, so funds to cover this service will need to be found from elsewhere in the Trust’s budget.

 

Source: Nuffield Trust