I have adopted this title for the review of Information Governance that the Secretary of State for Health has asked me to conduct in order to convey its essential purpose.
As technology has increasingly facilitated the treatment of patients and the provision of social care, concern has grown on the part of those who have entrusted their personal data to professionals, and also amongst those professionals, that the confidentiality of that data is insufficiently safeguarded. Does the data remain securely with those who the subject agreed could use it for their care, and only with them?
To what extent do the public and our patients understand the uses to which their data are put that are not directly related to their treatment and support?
In contrast, is that data shared appropriately when it is in the subject’s interest that it should be? There is increasing evidence of harm that comes from data not being shared to the detriment of the subject, sometimes to their incredulity.
So it was timely for the Future Forum to suggest that there should be much greater clarity about these matters, particularly given the changes in the Health and Social Care Act 2012.
As doctors, all of us have awareness of harm done to our own patient or a colleague’s because information was not shared with others involved in their care. The reluctance to share appears particularly strong across the boundaries of health and social care organisations, including independent sector providers.
As a former GP and psychiatrist, I know what it means to want the best for my patients. This has to include timely exchange of information to support their recovery, and avoid them having to repeat their clinical history to each professional they meet.
However, it must also be clear to the patient or service user how their information will be used and shared, and what control they can exercise, in line with the Government’s principle of ‘no decision about me, without me’.
I am probably best known as the person who introduced Caldicott Guardians into the NHS. Their task is to make balanced judgments about when patient information may be disclosed, taking account of legal and professional obligations; and ensuring that organisations protect information whilst also enabling its use.
Inappropriate disclosure damages the relationship people have with the NHS as a whole as well as with individual clinicians. However I am struck by the often negative depiction of the people and processes we have put in place to prevent breaches of patient confidentiality.
The review I am leading: ‘Information: to share or not to share?’ is consulting with public and professional representatives across the health and social care communities, to arrive at better solutions to these complicated issues. We want to unravel the complex issue of patient consent: when and how to seek it and what to record.
From my mental health background I am acutely aware of the need to protect patients and clients from exposure to others’ knowledge of their most intimate details. All of us will have encountered bad practice involving careless discussion of a patient’s illness in front of others. Tackling this means both understanding the rules and having the confidence to apply them appropriately.
Unfortunately, individuals often stand at one end of a spectrum. Some are dismissive or ignorant, perceiving information governance as a barrier rather than as setting appropriate boundaries to be managed and negotiated. These individuals should be jolted out of their complacency.
At the other end are those who are either risk averse or defensive, refusing to share information, even when that is to the detriment of their patients or clients.
Both groups are failing to focus on the needs of those patients or clients. This contravenes our professional ethics, which demand that we make care of our patients our first concern.
I urge everyone to participate actively in this review, so that care is improved, as well as patients’ experience. We plan to produce the report later this year and you can contact the review via Fiona.firstname.lastname@example.org with suggestions for people to consult or issues that you want to bring to our attention.
Dame Fiona Caldicott is the chair of the National Information Governance Board for Health and Social Care