[London, UK/ Implementations] - The steering group of the Information Governance Review has announced the 15 panel members that will study the new landscape in health and social care information protection and sharing. The members of the Panel have been drawn from clinical and local government professionals, and patient and voluntary groups.
A review of information governance (IG) rules was recommended by the NHS Future Forum earlier this year “to ensure there is an appropriate balance between the protection of patient information and the use and sharing of information to improve patient care” . Secretary of State for Health Andrew Lansley appointed Dame Fiona Caldicott to head the Information Governance Review — nearly 15 years after she produced the first Caldicott Report, on patient-identifiable information, in 1997 .
Dame Fiona Caldicott said: “I am delighted that the individuals who we invited to participate in this work have accepted enthusiastically. They will play a crucial role in ensuring we have effective connections with groups or individuals whose support we need if our recommendations are to be realistic and likely to lead to constructive and acceptable improvement. The breadth of panel members′ experience will guarantee us the necessary insights to identify the appropriate balance between sharing and protecting information.”
Back to the future
Speaking at the Health+Informatics conference earlier this month, Dame Fiona outlined the changing landscape that makes the new review necessary. However, if you browse through the February 1998 issue of BJHC (then bjhc&im)  you can see that some of the issues haven′t really changed in 15 years. As our editorial in that issue noted , the first Caldicott Report was commissioned because of the fear that “patient identifiable information was being unnecessarily transferred within and without the NHS”.
Other issues raised back then were advances in technology, system security, migrating to new systems, right to privacy, patients′ perception of confidentiality, information needs for providing prompt and effective care, and the legitimate needs of society.
Back to the present, the Health and Social Care Act has introduced a new landscape, said Dame Fiona at Health+Informatics, because of the new bodies that it creates. One of the most important questions is whether national bodies really need identifiable information — the NHS Information Centre has the powers to request confidential data from health and social care bodies. “If it is necessary to be identifiable then we have to look very carefully at the arrangements for information governance that have to be put in place.”
The new landscape
The responsibilities for data flows will be affected by the new model for health and care:
- monitoring and reporting: CQC;
- managing and advising on IG: NHS Information Centre; NHS Commissioning Board; Department of Health;
- responsibility for public health data flows: Public Health England (local authorities and DH);
- commissioning data flows: NHS Commissioning Board;
- adult social care data flows: Department of Health, local authorities, Department for Work and Pensions.
There are anxieties about new bodies for commissioning created by the Act and their readiness to take on the responsibility for information governance. In addition, “there is no reference in the Act about the commissioning support services that have appeared rather late in the day in the structures and are clearly going to have a lot of power in the commissioning world. They are covering large areas of the country. At the moment we have a silence about how, being established, [they] see their responsibilities in this area.”
Other IG issues raised by the Act are the dual role of GPs in both delivering care and commissioning, the new structures for public health, and the interface between health and social care. Technology makes it easy to share information, so there is a need to be much more rigorous about the rules to make sure that is properly administered.
The importance of information for care
Dame Fiona said that a balance has to be struck between confidentiality and the need to access information. Not being able to access or share information can have dire consequences for patients: “You will all have read the alarm stories about clinicians who have been unable to access records quickly when there is an extremely ill patient in front of them. That leads into questions about whether the technology used in the NHS is always as up to date as some of the things for which we want to use the data for.
I think there are some areas where we need to think about the safety of the patient.”
The data belongs to the patient
One of the few targets in the Act is giving patient access to their primary care records by the end of this government′s term, though even Dame Fiona cautioned that this “is quite a tall order for hard pressed general practitioners and their team in managing this in the next two years”. However, “there is now some evidence that patients having access to their record has a beneficial effect on the use of resources in the NHS, apart from the fact that many patients wish to have access to their records.”
One of the principles laid out by the Future Forum is that the data belongs to the patient. “It is the respect that it is their data that needs a much stronger underpinning in the conversations that go on in this area. The normal presumptions that those involved in care have access to data with consent. I don′t think that assumption is justifiable.”
The Review Panel will publish an interim report after the consultation on the NHS constitution in the autumn and has been asked to report by the end of this year. The public can send submissions to the Review . [hw]
1. Further information on the Caldicott2 Review and the members of the Panel
2. NHS Future Forum reports (second set published January 2012)
3. The original Caldicott report: The Caldicott Committee report on the review of patient-identifiable information. London, Department of Health. December 1997.
4. Richard Turner. The Caldicott Committee reports. Br J Healthcare Comput Info Manage 1998; 15(1): 20-2.
5. Editorial. Br J Healthcare Comput Info Manage 1998; 15(1): 3.
6. The National Information Governance Board