Over recent years, there has been a growing perception that information governance was being cited as an impediment to sharing information, even when sharing would have been in the patient’s best interests. There has been a strong emphasis on the potential benefits of sharing information across organisational professional boundaries within health and social care, in order to ensure effective co-ordination and integration of services. The importance of security and confidentiality is still key when sharing personal information. New data protection legislation has underlined these principles and should not be seen as a hindrance but as a governing process.
In May 2011, the Information Commissioner issued a data sharing code of practice specifying that - "Under the right circumstances, and for the right reasons, data sharing across and between organisations can play a crucial role in providing a better, more efficient service… but… rights under the Data Protection act must be respected. Organisations that don’t understand what can and cannot be done legally are as likely to disadvantage their clients through excessive caution as they are by carelessness.”
This piece of work “Information: To share or not to share?” has become known as the ‘Caldicott 2 review'. The review specified, “The duty to share information can be as important as the duty to protect patient confidentiality”.
The guidance in the report is to aid health and social care professionals and staff to share information appropriately in their day-to-day activities, whilst using their judgment to act in the best interests of their patients and clients. They should be supported by the policies of their employers, regulators and professional bodies. It is still however recommended that in complex situations where solutions are not obvious, that professionals and staff continue to be encouraged to seek advice from their Caldicott Guardians in exceptional and difficult circumstances.
The review recognised that there was widespread support for the original Caldicott principles, which are as relevant and appropriate today as they were in the initial Caldicott Report published in 1997. However, the Panel were persuaded, following evidence received during the Caldicott 2 review, of the need for some updating and the inclusion of an additional seventh principle.
“New technologies and ways of sharing data mean that we can now gain huge benefit from the sharing of health and care data, both in terms of individuals’ own care and the broader social good of advancing research and treatment. However, as NDG I have seen time and again that most praiseworthy attempts at innovation falter if they lose public trust. Those entrusted with looking after and using patient data must demonstrate their right to be trusted by adopting the highest standards of data security and giving people a right to a genuine choice over how data is used. The public must be included in understanding and supporting innovation which relies on data generated by their use of health and care services” Dame Fiona Caldicott