1. NIGB #NIGB #HSCIG Leeds – Birmingham - London
NIGB IG Collaborative Workshops
The Reality of Delivering the Information Revolution
NATIONAL INFORMATION GOVERNANCE BOARD FOR HEALTH AND SOCIAL CARE
#NIGB
#HSCIG
Leeds – Birmingham - London

2. Information Governance Building an Effective Partnership
NIGB Regional Workshops
June 2012

3. Positioning IG Patient and Public information
Professional record keeping
Information Governance
Business services ; tariff, workforce
Finance relating to payments
Datasets and terminology
Technical Standards; messaging, interoperability
Information
Standards
Portfolio
Business Reports
Care Records
NHSCB | Presentation to NIGB Workshops| June 2012

4. The ‘Act Effect’ NHSCB will publish information standards
NHS in England
SoS for Public Health and Adult Social Care
NHSCB will provide IG direction and guidance system-wide
Public Health, Social Care, Department of Health, Health Research
Information Centre to publish Code of Practice
Collection, analysis and publication and dissemination of confidential information
IG Review (underway)
NHSCB | Presentation to NIGB Workshops| June 2012

5. The Power of Information
Access to GP individual care records
Information to drive integrated care
Across the entire health and social care sector
Both within and between organisations
Information recorded once, by the professional carer
Shared securely between those providing care
Information standards that enable data to flow
Keep confidential information safe and secure
Records become source for information to improve care, services and inform research
NHSCB | Presentation to NIGB Workshops| June 2012

6. The ‘Deal’ with the Public
“You have a right to access your data and a right to withhold consent to its being shared. You have a corresponding responsibility to let us use your data in the interests of your own care and of improving services for others”
“We have a right to use your data, and a corresponding responsibility to tell you exactly what we plan to do with it and, when sharing it, to take all reasonable steps to protect your confidentiality”
The Power of Information Para 5.39 May 2012
NHSCB | Presentation to NIGB Workshops| June 2012

7. NHSCB IG Vision Common language – remove complexity
IG to be a true enabler;
balance between protecting and sharing
Right data, right people, right place, right time
Digital first
Personal responsibility
Deal with the public
Use of system and professional levers; national contract
Clear accountability and responsibility across the system
NHSCB | Presentation to NIGB Workshops| June 2012

8. Monthly meeting of all IG leads; chaired by NHS CB
Partnership In Action
Function
Single ‘up front’ governance model
Business not technically led
Whole system oversight
Thematic sub-groups
Approval criteria;
Business cases
Funding
Implementation plans
Levers and incentives
Exploitation and reusability
Partnership Membership
NHS Commissioning
Public Health
Adult Social Care
Department of Health
System Regulation
Collaborative Membership
Professional Regulation
Local Authorities (Social Care)
Providers of Care
Burden of collection
IT system suppliers
Information Commissioner’s Office
Monthly meeting of all IG leads; chaired by NHS CB
NHSCB | Presentation to NIGB Workshops| June 2012

9. Information Governance
Governance Model
Information Governance
Requirements
Single point of contact
Consistent direction and advice
Clinical and Business Ownership
Supported by IG Advisory Group
and thematic groups
Approvals Governance
Specification
Technical Specification if required
Commission SME
Delivery
Nominated IG Leader
(from one of the partner organisations)
NHSCB | Presentation to NIGB Workshops| June 2012

10. IG Thematic Groups Information Management, Data Flows and Linkages
NHS Transition Issues and Communication
IT Systems, Applications and Services
Strategy, Regulations and Levers
Includes ICO Liaison
Professional and Personal IG
External reference groups providing input into the IG Advisory Group
- the opportunity for local IG leads to get involved
NHSCB | Presentation to NIGB Workshops| June 2012

11. IGT or Not? Self Assessment What value does this deliver value;
Without teeth
National Contract
Use of system and professional levers
No System Management in new system
What is an IG Standards – help us shape?
Needs to be reviewed and justified
Value – Cost – Risk Impact
NHSCB | Presentation to NIGB Workshops| June 2012

12. IG is a key enabler – let’s make it one. Thank you
NHS | Presentation to [XXXX Company] | [Type Date]

13. NIGB #NIGB #HSCIG Leeds – Birmingham - London
NIGB IG Collaborative Workshops
The Reality of Delivering the Information Revolution
NATIONAL INFORMATION GOVERNANCE BOARD FOR HEALTH AND SOCIAL CARE
#NIGB
#HSCIG
Leeds – Birmingham - London

14. NIGB #NIGB #HSCIG Leeds – Birmingham - London
NIGB IG Collaborative Workshops
The Reality of Delivering the Information Revolution
NATIONAL INFORMATION GOVERNANCE BOARD FOR HEALTH AND SOCIAL CARE
#NIGB
#HSCIG
Leeds – Birmingham - London

15. Getting Started with IG
NIGB Collaborative Workshops 2012 "The Reality of Delivering the Information Revolution“
Getting Started with IG
H Thomas, NHS IG Lead, NIGB
D Stone, Managing Consultant, Apira

16. Introductions
Hayden Thomas NHS IG Lead NIGB David Stone Managing Consultant Apira Limited

17. The NIGB definition of IG
Information governance describes the structures, policies and practices which are used to ensure the confidentiality and security of records of patients and service users.
Correctly developed and implemented it
Correctly developed and implemented it enables the appropriate and ethical and lawful use of information for the benefit of individuals and the public good’.
This is the definition of information governance that the Board have developed.

18. Compliance

19. Compliance Legal framework around personal data and its use
Law is in terms of responsibilities (not ownership)
Interactions of statute, guidance, concepts (public interest, vital interest) key areas challenge understanding

20. Legalese Data Protection Act 1998 Data Controller
Joint Data Controllers
Data Controllers in Common
Data Processors
Human Rights Act 1998
Common Law Duty of Confidentiality

21. Building Blocks Two building blocks for understanding
Primary Use (another perspective on secondary use)
Consent

22. Primary Use
Healthcare data – information about an individuals health provided to a healthcare professional for the provision of healthcare (and relevant administration - appointments).
Clear expectation of confidentiality
Also consider
Wider medical purposes
Implications for medical research

23. Consent Consent – contested term
Concept used in several ways by different groups
Implied Consent (NHS) – The patient turned up for treatment
Explicit Consent (Social Care) – Signed piece of paper or addition to record – issue explained to the service user
Informed Consent – that the person given consent has capacity and understands what they are consenting to

24. Legal Basis
Key legislation, schedule 3 of the Data Protection Act 1998
Explicit Consent
Mental and Physical Health
Sexual Life
Definition Health Professional and Health Record

25. Information Rights Advocacy

26. Information Rights
Right of Access to Information with a growing expectation of routine access
Patients access to data about themselves
Includes right access information about who has seen their record (implication should be able to understand why)
Freedom of Information
Disclosure (and eDisclosure) – concepts around court cases expectation all relevant information is provided to legal representatives of all parties
(Don’t forget EIRs)

27. Information Security

28. 8 passwords and a retinal scan
Information Security
Technical
Physical
Policy, Procedure and Governance
Business Process
Training

29. Information Risk

30. Information Risk What’s is your organisation’s Risk Appetite?
Where’s IG on the spectrum?
How do they set (or moderate) priorities in dealing with risk?
Where would it be after a data loss?
How engaged is your SIRO?
How often do you get to discuss the issues?
Key Issue – understand your organisational culture

31. Health Informatics

32. Clever things with information
Analysis
Service Management
Service Performance
Clinical Risk Management
Targeted Services
Inter-agency co-operation to deliver better health care
(Paying the bills)

33. Managing risk in the gap} {

34. ICO Incident Investigation
Reality Check
Satisfactory
Not Satisfactory
ICO Incident Investigation
Undertaking or Fine

35. Measures of Success? The IGT “a map not a straight-jacket”
CQC Outcomes
NHS Litigation Authority
Audit

36. Mandated and typical roles
SIRO
IAO
IAA
ISM
Caldicott RA
Records Manager
FoIA
SAR/DPA
IG Manager
Privacy Officer

37. Rule of 3s Security Confidentiality, Integrity and Availability
Controls
People, Technological, Organisational
Strategy
Governance, Risk and Compliance
Change
Leadership, Vision and Culture

38. When things go wrong...
Clear process for investigation and escalation Organisation understands that there is a problem Organisation understands that it must learn lessons Review process, training and support systems Iterative process – shows that the organisation learns and improves continually

39. Single Points of Truth Department of Health
National Information Governance Board
Information Commissioner’s Office
Legislation.gov.uk
National Archives
CESG

40. Geek & Peers

41. Getting Help Other Disciplines Records Management Clinical Governance
External Support
ICO, NIGB
Other IG managers in other organisations
Regional Forums (Health & Social Care)

42. Not matter how bad it is..
Telephone call on the weekend, system about to go live on Monday . Personal Identifiable Data – accessible to all users, can the IG manager sort out the IG over the weekend?
Managers drops in on a Friday afternoon, Trust building closed that day, they found 200 boxes – looks like patient records – could they be removed – new tenant moves in on Monday
We bought some new laptops and they “seem” to have gone missing. No we didn’t buy them through ICT, we had some spare money at the end of the financial year and ... oh are they encrypted? How would I know, I’m not from ICT.

43. NIGB #NIGB #HSCIG Leeds – Birmingham - London Tea and Coffee
NIGB IG Collaborative Workshops
The Reality of Delivering the Information Revolution
NATIONAL INFORMATION GOVERNANCE BOARD FOR HEALTH AND SOCIAL CARE
#NIGB
#HSCIG
Tea and Coffee
Leeds – Birmingham - London

44. The power of information
Putting all of us in control of the health
and care information we need

45. the vision: people first
Joined up systems and shared data standards will facilitate and drive integration within and between organisations and care settings to ensure that care is focused around the person and their health and care needs. This is why the strategy spans the NHS, public health and social care.
Getting the right information to the right people at the right time – in a form they can understand, engage with and contribute to – will help individuals take control of their own care, improving self-management, shared decision making, and more informed choices.
Needs support and advocacy to help people in all sectors of society to make meaningful use of it, harnessing modern technology where that is helpful. 45

46. the information strategy: main ambitions
• Information used to drive integrated care
across the entire health and social care sector
• Information regarded as a health and care service in its own right –
with appropriate support in using information available for those who need it, so that information benefits everyone and helps reduce inequalities
• A change in culture and mindset, in which our health and care professionals, organisations and systems recognise that information in our own care records is fundamentally about us - so it becomes normal for us to access our own records
• Information recorded once, at our first contact with professional staff, and shared securely between those providing our care – supported by consistent use of information standards that enable data to flow between systems whilst keeping our confidential information safe and secure

47. the information strategy: main ambitions
• Our electronic care records become the source for core information used to improve our care, improve services and to inform research, etc. – reducing bureaucratic data collections and enabling us to measure quality
• A culture of transparency
where access to high-quality, evidence-based information about services and the quality of care held by Government and health and care services is openly and easily available to us all
• An information-led culture where all health and care professionals take responsibility for recording, sharing and using information to improve care
• The widespread use of modern technology
to make health and care services more convenient, accessible and efficient
• An information system built on innovative and integrated solutions and local decision-making, within a framework of national standards that ensure information can move freely, safely, and securely around the system

48. the vision: modern convenient information
2. Booking appointments will be quicker when you can do it online
3. You’ll need fewer phone calls when you can communicate with professional teams electronically
1. Accessing your GP record online will give you more control over your care
4. You’ll have less paperwork in your life when your healthcare letters are available online
5. You’ll know where to go for health and care information when there is one trusted website
6. Services will do more to offer you support you use and understand information if and when you need it.
9. You will have more information to help you choose the best services and treatments for you
7. You won’t have to repeat yourself when your information is shared between health and care professionals
8. You’ll be confident that your feedback is being listened to and helping to improve services

49. what we heard: information governance
Consultation responses recognised:
the importance of providing safeguards to accessing data
barriers to sharing data get in the way of high quality care
The NHS Future Forum received a clear message:
not sharing information has the potential to do more harm than sharing it 49

50. what we heard: information governance
The NHS Future Forum also proposed a ‘deal’ along the lines:
“You have a right to access your data and a right to withhold consent to its being shared. You have a corresponding responsibility to let us use your data in the interests of your own care and of improving the service for others.
We have a right to use your data, and a corresponding responsibility to tell you exactly what we plan to do with it and, when sharing it, to take all reasonable steps to protect your confidentiality.” 50

51. the vision: information governance
Government has commissioned an independent review of information governance rules and their application, led by Dame Fiona Caldicott
to ensure an appropriate balance between:
the protection of confidential and identifiable information within our health and care records and
the use and sharing of information to improve the quality and safety of our own care and for the benefit of wider society
Government has also committed to consulting on an amendment to the NHS Constitution
to make more explicit proposals for the ‘consent deal’ 51

52. the vision: care records - a core source of data
Better care 52

53. the strategy online: aimed at real people
online version includes sections on “what the strategy means for me” using a wide range of case studies
easy-read developed in partnership with CHANGE, a learning disability organisation
equality impact assessment co-produced by the Department of Health with 13 other organisations
extensive partnership working with Intellect, Royal College of GPs and many others

54. NIGB #NIGB #HSCIG Leeds – Birmingham - London
NIGB IG Collaborative Workshops
The Reality of Delivering the Information Revolution
NATIONAL INFORMATION GOVERNANCE BOARD FOR HEALTH AND SOCIAL CARE
#NIGB
#HSCIG
Leeds – Birmingham - London