Transcription of The Information Governance Review
1 The Information Governance ReviewInformation: To share or not to share?The Information Governance ReviewMarch 20133 ContentsChairman s foreword 5 Executive summary 91 Introduction 232 People s right to access Information about themselves 293 Direct care of individuals 354 Personal data breaches 495 Information Governance and the law 556 Research 617 Commissioning 738 Public health 859 Education and training 8910 Children and families 9311 New and emerging technologies 10112 Data management 10313 System regulation and leadership 11314
2 Conclusions and recommendations 116 Glossary 124 Appendix 1: Membership of the Information Governance Review 131 Appendix 2: Information Governance Review terms of reference 133 Appendix 3: Excerpt from NICE Clinical Guideline 138 134 Appendix 4: Examples of Information Commissioner s Office actions up to August 2012 135 Appendix 5: List of identifiers for figure 1: simplified framework of data processing from a legal perspective 136 Appendix 6: Contracting arrangements 1375 Chairman s forewordEvery citizen should feel confident that Information about their health is securely safeguarded and shared appropriately when that is in their interest.
3 Everyone working in the health and social care system should see Information Governance as part of their that is not currently the case, as the Future Forum so clearly described in its report in January 2012. This strongly recommended to Government that a Review of Information Governance should be commissioned, to include the current rules and their application. The Secretary of State for Health in England accepted the recommendation and asked me to conduct such a Review had gained some familiarity with the issues when I chaired a Review in 1996 97 on the use of patient-identifiable data.
4 We recommended six principles for the protection of people s confidentiality, which became known as the Caldicott principles . They included a recommendation that organisations should appoint someone to take responsibility for ensuring the appropriate security of confidential Information . The people undertaking these responsibilities became known as Caldicott Guardians .My association with the subject developed in June 2011 when I became chairman of the National Information Governance Board during the final period of its existence before disestablishment in March 2013.
5 There I heard first hand about concerns relating to Information Governance that arose during the passage through Parliament of the Health and Social Care opportunity to undertake a further useful piece of work, affecting the delivery of the best care possible to our population and reassuring citizens that their Information is in safe hands, was for me accepting the invitation, and having learned in 1996 97 how best to approach such a task to achieve a useful outcome, I decided to ask key organisations to suggest suitable individuals who would constitute a small panel of relatively expert members, individually independent : To share or not to share?
6 The Information Governance ReviewOur overarching aim has been to ensure that there is an appropriate balance between the protection of the patient or user s Information , and the use and sharing of such Information to improve hope that the reader of this report will think that we have achieved some success to that has been gratifying to learn, in the course of the Review , that the Caldicott principles continue to be valuable, but would benefit from minor amendments. The original report was written in 1997 when the service was more paternalistic and much less patient centred.
7 Now citizens are a lot more concerned about what happens to their Information ; who has access to it, for what purposes is it used, and why isn t it shared more frequently when common sense tells them that it should Future Forum s key recommendation relating to Information Governance stated that data sharing is vital for patient safety, quality and integrated care. We endorse this wholeheartedly and have been struck by the loss of confidence of many clinicians with whom we spoke, about when it is safe to share Information and the safeguards that are required for won t come as a surprise that, writing within a few weeks of the publication of the second Francis report on Mid Staffordshire NHS Foundation Trust, we were struck by the need for cultural change in the NHS.
8 A re-balancing of sharing and protecting Information is urgently needed in the patients and service users interests, which is supported by those citizens with whom we discussed these is clearly an urgent and ongoing need for education and training in this area for staff, and also for patients and service users. Given the imperative to meet the needs of an ageing population, particularly at the boundary between health and social care, it is crucial that systems for principled sharing of Information are well understood.
9 As the Health and Social Care Act 2012 takes effect public health, within its new managerial structure, must also be is imbalance in other parts of the system too. While the research community has protested in the past at perceived impediments to their endeavours deriving from Information Governance , they have worked hard to resolve these. Patients are generally keen to contribute to research but do want their consent obtained s forewordThe new commissioning arrangements have highlighted concerns about identifiable Information being sought excessively and used all these situations the Panel has attempted to clarify, simplify where possible, and remind the reader of the law and the rules pertaining to confidential Information and its has been a privilege to work with members of the Panel and the officers supporting our work.
10 We all hope that this report will prove useful and the Secretary of State for Health will ensure that it is considered carefully, that our recommendations are implemented and monitored for the wellbeing of the population, and for the benefits in care that will be derived from research, appropriate commissioning of services, and policies in relation to the public s we were asked to consider the issues in England, there is much in our report which should prove useful in all the jurisdictions of the United Caldicott March 20139 Executive summaryChapter 1: IntroductionPeople using health and social care services are entitled to expect that their personal Information will remain confidential.
