Paper presented by Raab for the Privacy Workshop, chaired by Edwards and held in September 2005

Raab, Charles D

Edinburgh Research Archive

PRIVACY ISSUES IN INTEGRATED PUBLIC SERVICESCharles D. RaabUniversity of Edinburghc.d.raab@ed.ac.ukESRC RESEARCH PROJECT: PRIVACY AND DATA-SHARING IN MULTI-AGENCY WORKING(RES/000/23/0158)Christine Bellamy & Perri6 (Nottingham Trent University)Charles Raab(University of Edinburgh)GOVERNMENT POLICIES•Joined-up government/better delivery of public servicesIntensive and extensive use of personal data, including sharing across boundaries•Protecting personal data/human rightsGreater personal control of information, including government transparencyTENSIONS?•Not inevitable: some say that good privacy protection can mean good information-sharing and good joined-up government•But in practical decision-making contexts (e.g., health and social care, including child protection), there are tensions and conflicts between privacy and data sharing, and between running opposing risksWHAT ARE THE TENSIONS BETWEEN DATA-SHARING AND PRIVACY IN MULTI-AGENCY WORKING? •Intensification of information sharing:–Commitment to major extension of e-government, ‘joined-up government, service and data integration–Identity cards and population register (Citizen information Project), comprehensive database on children–Preventive approaches to managing risk–Targeted social intervention programmes–Desire for resource efficiency and effectiveness through discriminating judgments in social policies–Enhanced emphasis on citizen obligations•Laws for privacy protection: –Implementation of European Directive 95/46/EC–Implementation of Data Protection Act 1998–Human Rights Act 1998–Common law of confidentialityWHAT ARE THE RISKS OF SHARING OR NOT SHARING DATA?•Risks to dignity and risks to justice•‘False negative’judgment errors: no action taken, but ought to have been taken (if information had been shared): sometimes with adverse consequences •‘False positive’judgment errors: action taken, but ought not to have been taken (if privacy had been respected): sometimes with adverse consequences•Current shift to intolerance of ‘false negative’judgment errors and preference for action even if ‘false positive’judgments are madeHOW ARE THEY BEING MANAGED?•Horizontal Strategies(generic, across government)DPA 1998 and Information CommissionerPIU Report (2002)DCA’s‘Toolkit’(2003)Data standards and quality•Vertical Strategies(specific, within sectors and partnerships; diversity)ProtocolsCodes of practiceProfessional ethicsTraining, roles and culture changeDCA’s‘TOOLKIT’•Legal guidance on viresfor sharing without consent•Model protocol•Codes of practice•‘Trust Guarantee’•Analytical Framework/Privacy Impact AssessmentDEVELOPMENTS IN HEALTH CARE (UK)•NHS Information Authority (NHSIA, to 4/05); now Connecting for Health; response to patchy ability to share patients’data in and around NHS; overcome legacy systems, poor implementation, non-integration•National Programmefor IT (NPfIT): many systems/procurement; centralised; £2.3 bn; IT and data standards; cradle-to-grave ‘spine’summary patient record; Care Records Service, and other e-functions planned (booking, prescriptions, clinical decision tools); => sharing of records•Confidentiality and privacy?  KEY ISSUE: PURPOSES•Are purposes specified so broadly that they may fall foul of the Data Protection Act 1998?•How are purposes communicated to patients?•Integration of care and non-care purposes?KEY ISSUE: CONSENT•How can informed consent be ascertained?•Costs of obtaining consent•Segmented consent (‘sealed envelope’)•Consistency of practice across sitesKEY ISSUES: NECESSITY AND PROPORTIONALITY•Who needs to know, and why?•How much do they need to know?•Routine access to databasesPRIVACY AND CONFIDENTIALITY IN THE NHS: (I)•Modern health practice requires new rules; doctor/patient confidentiality outmoded•CaldicottGuardians in NHS agencies (1997; also in Social Care, 2001 +): senior staff in the NHS and social services appointed to protect identifiable patient information; protocols; 6 principles:–justify purpose–absolute necessity to use–minimum necessary–access strictly ‘need to know’–awareness of responsibilities–understand and comply with lawPRIVACY AND CONFIDENTIALITY IN THE NHS (II)•Confidentiality: NHS Code of Practice(2003): privacy friendly ‘confidentiality model’-addresses ‘key issues’; disclosure (sharing) rules for different purposes (health care, non-health care, non-NHS); consent; ‘sealed envelope’; ‘no surprises’•‘Role-Based Access Control’(RBAC) •‘Care Record Guarantee’•Subject Access (‘MyHealthSpace’)•Patient Information Advisory Group (PIAG) and research use of information (Health ad Social Care Act 2001,  60)•Information Commissioner’s guidance (2002)LIMITS AND PROBLEMS•Pressure on data protection principles from the way in which ‘proportionality’and ‘need to know’are construed in sharing information, and how consent is obtained•In multi-agency working, potential inconsistency through ‘vertical’variations in eliciting consent•Gateways for data sharing are separate vertical settlements•Uncertainty about need for primary legislation to grant powers to share •Overtaken by events: further pressure for sharing and tolerance for ‘false positive’judgment errors (e.g., in child protection)•No settled ‘horizontal’regulatory framework: practitioners’judgments are inescapableVARIATIONS IN JUDGMENTS•Codes, protocols, rule interpretations inevitably leave room for judgment by practitioners•Preliminary research findings in health, social care and policing show that sharing/confidentiality (privacy) judgments are shaped by variable (local) organisationalsettings, which influence the salience of rules and norms governing sharing/non-sharing of personal data•Different propensity to take’false positive/false negative’risk also affects these decisionsWIDER ISSUES•Rules for data-sharing and privacy: too much and too formal?•Blame: conflicting pressures on professionals?•Data processing and sharing: too much for public trust?CONCLUSION•To understand privacy and data-sharing in the public services (e.g., health), we need to know much more than what the laws require, permit or forbid•We need to understand (and explain) decision-making behaviour; the constraints and opportunities within the decision-making contexts; why and how these vary; and what the consequences are for reconciling tensions between privacy and the sharing of personal information

Privacy issues in integrated public services

https://era.ed.ac.uk/bitstream/1842/2104/1/39_raabprivacyinpublicservicesaug05.pdf

Privacy issues in integrated public services

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