Health Information Strategy for New Zealand Sharing personal health information

Outline HIS-NZ and the signalled future environment Principles and the 6 uses of data Engagement with stakeholders HISAC’s approach going forward

HIS-NZ and the signalled future environment

Principles and the 6 uses of data

Engagement with stakeholders

HISAC’s approach going forward

Health Information Strategy for New Zealand Discounts a single electronic health record Signals increased information sharing 12 Action Zones Independent Ministerial Committee to oversee implementation

Discounts a single electronic health record

Signals increased information sharing

12 Action Zones

Independent Ministerial Committee to oversee implementation

Action Zones Enabling Use Information Care Delivery, Funding, Planning, Policy & Research Views of Information AZ 7: Long Term Conditions Management AZ 10: Primary Care Information AZ9: Outpatients Information Transactional Informational Flows AZ 5: eLabs AZ 4: ePharmacy AZ 6: eDischarges AZ 8: eReferrals HISAC / Sector Agenda Setting & Governance National Local Sector Ownership Interoperability & Access AZ11: National Systems Access AZ 1: National Network AZ 12: Anchoring Framework Information Anchors AZ 3: HPI AZ 2: NHI

ICT in the New Zealand Health Sector Electronic Record Keeping incl. patients Health Network & Secure e-mail Access to Key Event Summaries ePharmacy eLabs Hospital Discharge Summaries National Network Strategy Primary Care Information Long Term Conditions Management National System Access Electronic Referrals National Outpatient Collection Health Network & Secure e-mail Health Network & Secure e-mail ePharmacy eLabs Hospital Discharge Summaries Chronic Care & Disease Manage Electronic Referrals Future A c c e s s t o Ke y E v e n t S u m m a r i e s Health Network & Secure e-mail Hospital Discharge Summaries Electronic Record Keeping incl. patients Long Term / Residential Care Community Primary Care Secondary Care National MoH / ACC Current

6 uses of information in the health context Enabling self-management Supporting clinical intervention Clinical Governance Professional and practice standards Education and training Research, evaluation and development Great accountability through risk mgmt and significant event monitoring Clinical Audit, team development, peer support, effective relationships Patient and community input into service development Administration (in all parts of Health) Includes evaluation, quality assurance and payments/funding Strategy and policy development Research

Enabling self-management

Supporting clinical intervention

Clinical Governance

Professional and practice standards

Education and training

Research, evaluation and development

Great accountability through risk mgmt and significant event monitoring

Clinical Audit, team development, peer support, effective relationships

Patient and community input into service development

Administration (in all parts of Health)

Includes evaluation, quality assurance and payments/funding

Strategy and policy development

Research

Principles No central / single electronic health record nationwide Electronic health records are distributed but can be linked and referenced Health event summaries are the starting point for shared information Make accessible key event summaries to support safe delivery of care / integration Common standards and information anchors are needed to allow disparate systems to share information Data collection is integrated into every day work practices Detailed data is used and maintained locally at the point of care = enter once and use many times Information flows are governed by agreed principles and processes

No central / single electronic health record nationwide

Electronic health records are distributed but can be linked and referenced

Health event summaries are the starting point for shared information

Make accessible key event summaries to support safe delivery of care / integration

Common standards and information anchors are needed to allow disparate systems to share information

Data collection is integrated into every day work practices

Detailed data is used and maintained locally at the point of care = enter once and use many times

Information flows are governed by agreed principles and processes

Health Information Hierarchy Community Population Individual National Views District / Regional Views Local Views Appropriate views / subsets of the information below. Relevant views of information above. Capture, use, and share information locally at the point of care. Standards Indicators Health Outcomes

Stakeholder engagement Strong clinical and IT/IM engagement Accepted need to improve consumer engagement Consumer Forum initiated Recognised need to ensure engagement is with all stakeholder groups and the ‘community’ is the hardest to identify

Strong clinical and IT/IM engagement

Accepted need to improve consumer engagement

Consumer Forum initiated

Recognised need to ensure engagement is with all stakeholder groups and the ‘community’ is the hardest to identify

Themes What information is collected and shared in which circumstances Trust and confidence in the health system is related Clinical representation of individuals interest Consumers need a safe and trusted environment to explore the issues Equal and full participation in the debate Misconceptions of current and proposed practice (both ways) High potential for the debate to be derailed ‘ there is an awful lot of talk about us, but not with us’ ‘ nothing about us, without us’ ‘ you trust a person with whom you have a relationship, you don’t trust systems unless you’ve been part of their development’

What information is collected and shared in which circumstances

Trust and confidence in the health system is related

Clinical representation of individuals interest

Consumers need a safe and trusted environment to explore the issues

Equal and full participation in the debate

Misconceptions of current and proposed practice (both ways)

High potential for the debate to be derailed

‘ there is an awful lot of talk about us, but not with us’

‘ nothing about us, without us’

‘ you trust a person with whom you have a relationship, you don’t trust systems unless you’ve been part of their development’

Next steps Reconvene Consumer Forum within 6 months Consumer perspective appointed to HISAC Ensure opportunity for consumer input into all projects, working groups and relevant activities Improve communications to the community, through the Consumer Forum and through other identified avenues and channels Ongoing interaction with the Privacy Commission Massey / HRC research project commenced Law Commission report on Privacy and health information MoH education / awareness on NHI and national collections Publication of the HISAC information flows model Implementation leads/projects assessment criteria extended

Reconvene Consumer Forum within 6 months

Consumer perspective appointed to HISAC

Ensure opportunity for consumer input into all projects, working groups and relevant activities

Improve communications to the community, through the Consumer Forum and through other identified avenues and channels

Ongoing interaction with the Privacy Commission

Massey / HRC research project commenced

Law Commission report on Privacy and health information

MoH education / awareness on NHI and national collections

Publication of the HISAC information flows model

Implementation leads/projects assessment criteria extended