Health and social care is being transformed so that each individual can have greater control of their own care. There has been an explosion of information produced by the increase in internet use, social media and electronic information systems and we want patients and service users to be able to take advantage of this. This makes protecting confidential information the starting point, if people and professionals are to feel confident about the security and appropriateness of information sharing.
For too long, people have hidden behind the obscurity of the Data Protection Act or alleged rules of information governance in order to avoid taking decisions that benefit the service user or patient. I was asked by the Secretary of State to review the balance between confidentiality and information sharing in this context. My panel’s report has reinforced the duty of staff to share information to ensure safe and effective care for service users and patients.
We are equally committed to ensuring that the patient or service users’ wishes are respected in relation to how their information is used. While people are unlikely to object to sharing confidential information within their own care team, there are some who may not want it used for purposes such as research or reshaping a patient pathway in order to achieve safer care in general. These wishes must be respected by everyone who has access to health and social care data. This guide supports the individual’s right to object and sets out how organisations should respect this.
We want to make sure that people have no surprises about how information about them is used. The following guide to confidentiality shows how to ensure this happens. It has been distilled into five rules which set out all the obligations to be fulfilled. We expect it to become part of the DNA for all staff in residential homes, providing care at home, working in wards and in communities. The guide is a living document which we will keep updated to reflect changes in health and social care that have consequences for how information is handled. Individuals should be reassured by this guide and its commitment to ensuring that information is shared for safe and effective care while their privacy and confidentiality is protected.
Dame Fiona Caldicott Chair of the Information Governance Review - To Share or Not to Share
Kingsley Manning Chair, Health and Social Care Information Centre