Records without boundaries? Penny Hill

Objectives of the session To identify the issues around managing record boundaries and how the CRDB is addressing them in relation to the National Care Record To capture other potential issues and identify solutions where possible To help you consider what you can do on a local basis

Boundary Something that indicates a border or limit The border or limit so indicated A boundary could say: This is where the rules (or language) change This is where someone else becomes responsible This is where I need a passport (a legitimate reason such as permission/consent) before I can go any further

Barrier A structure, such as a fence, built to bar passage Something immaterial that obstructs or impedes: A barrier means: Go no further Keep Out (or Stay In) Thou shall not pass

Barriers are obstructive Boundaries are protective To enable people to get the help and care they need, we should be getting rid of the barriers, but managing the boundaries around their records.

But where do we draw the lines? Quick Opinion Poll: Who do you think should be able to see your personal care record? What boundaries should exist, and what do you see as barriers?

Current Boundaries and Barriers Geographical: - Paper records, or location-based systems - Overlapping or multiple organisational geographies - People move about, services generally stay in one place - Local issues, national priorities - Four Countries in one United Kingdom

Current Boundaries and Barriers Cultural: - Speaking the same language - Agreeing the same needs - Recording consistently (and in the same way?) - Variations in codes of conduct / organisational policies

Current Boundaries and Barriers Technical: - Lack of common standards (coding, storage, data definitions) - Different systems, different suppliers - Legacy systems, lacking appropriate controls - ‘Closed’ not open systems - Isolated networks, separate, unconnected records

Current Boundaries and Barriers Legal: - Human Rights Act - Freedom of Information Act - Data Protection Act - Children’s Act - Crime and Disorder Act - Health and Social Care Act - Etc, etc…

Managing Boundaries in the National Care Records Service Shared technical solution Common standards for recording Common structure of records Nationwide network Single patient summary record accessed when needed Standards for messaging & information exchange

Managing Boundaries in the National Care Records Service CRDB work underpinned by Ethical Principles -The interests of patients and service users come first. -Informed consent and personal autonomy should underpin the provision of health and social care -The right information should be available to the right people at the right time to provide individual care whilst preserving confidentiality. docs/crbb/crdb_ethical_prin.pdf

Managing Boundaries in the National Care Records Service Care record guarantee We will not share information outside the NHS that identifies you for any other reason unless: -you give us specific permission; -it is required by the law; -we have good reason to believe that failing to share the information would put someone else at risk. Where, exceptionally, information is shared without your permission, we will ensure that the NHS Confidentiality Code of Practice and other national guidelines on best practice are strictly followed. b/nhscr_guarantee.pdf

Managing Boundaries in the National Care Records Service Information Governance Mechanisms Registration Authorities User Authentication Smartcard login Role-Based Access Legitimate Relationships ‘Sealed’ Envelopes Codes of connectivity and Spine compliance

Role-Based Access. Legitimate Relationships Role:Relationship General Practitioner Registered Practice Out of Hours Service Emergency ConsultationPractice Nurse Receptionist/Administrator

How will this change things? Managed access across a countrywide system Those who need to see a record will see only what they need to know Audit trails: reasons for access recorded and monitored Patient centred records with the patient informed and involved Consistent practice, consistent recording, consistent security

Local Mechanisms Information Governance frameworks Audits identifying local compliance with national standards Ensuring local flexibilities Managing the non-technical aspects of boundary management Information Sharing protocols Local customisation Supporting Multi-agency working

Case Studies: Assuming the starting point is the data in the Health record held by the GP: Who would you give all (or part) of the record to in support of the case? - What protections would you want in place to manage this? Who would you not want to have access to the records? Who might you approach for further information and what protections would you expect them to apply?