The document discusses the importance of health data sharing in Ireland to improve healthcare services, service planning, and research outcomes. It addresses the existing challenges such as data incompatibility, public perceptions regarding data sharing, and the need for a cohesive health information strategy. Recommendations include fostering trust through clear consent processes and establishing a national framework for data governance and management.

1. Health Data Sharing -
Scene Setting
• IPPOSI Annual Conference - ‘Building a Data-
Sharing Enabled Health Sector in Ireland.’
• May 3rd 2023
Professor Richard Greene,
Chief Clinical Information Officer – HSE
Director, National Perinatal Epidemiology Centre
Professor of Clinical Obstetrics,
Consultant Obstetrician and Gynaecologist

2. Discussion points
•Data Use Types
•Legislation
•The Citizen View
•Value Based Healthcare
•The Route to high value Data
Sharing

3. Data and Information Definitions
Intelligence
Information
DATA
Data intelligence is the analysis of various
forms of data/information in such a way that it
can be used
When data are processed, interpreted,
organized, structured or presented so as to
make them meaningful or useful information
Data are simply facts or figures used to
calculate, analyse, plan — bits of
information stored on a computer

4. Primary Use:
This data is used and shared between the
healthcare professionals who take care of us,
to provide us with better care and to ensure
the best possible treatment and outcome.
But our data can also be valuable, even
indispensable for service evaluation, public
health and research
• ‘Health Information’ generally means
‘information about an individual person which
may be relevant to decisions about current or
future health or illness’.
• For the purposes of this presentation, we are
focusing on information collected as part of
clinical care and treatment, that is held in
health records (GP records, hospital records,
other provider records, etc.), and
• Used for the purposes of individual care
• Used for purposes beyond personal care (e.g. for
service improvement, policy change, health research
or innovation).
Health Data

5. Data sharing underpins
• Service planning and assessment
• Life-saving research
• Decision-making
• Managing health threats (e.g. COVID-
19)
• Understanding Population Needs
(Children with visual impairments,
Dementia care)
The more health data is available and accessible
for analysis, the better researchers and decision-
makers can understand what is happening and
develop tailored solutions.
• One third are comfortable if identifiable
information is used for service planning
and the majority are comfortable if non-
identifiable data is used
• People are not necessarily aware of other
secondary uses beyond research for
example audit, service evaluation
Irish people's views on the collection, use and sharing of health information. Dr. Sarah
Jane Flaherty. Health Information Research Officer (Talk Monday 24th April UCC)
Secondary Use

6. It can still be difficult to share
health data, even in emergencies.
This is because health
stakeholders such as hospitals,
general practitioners or
researchers collect data in many
different formats which are
incompatible with one another.
 Almost all think it is important that a doctor has
access to ‘all’ their health information
 Two-thirds would like to know what information
will be shared between the GP and hospital
 People are willing to share information for
secondary purposes if there is personal or
public benefit.
 People are not aware of what health
information is shared and who has access to it.
Irish people's views on the collection, use and sharing of health information. Dr. Sarah
Jane Flaherty. Health Information Research Officer (Talk Monday 24th April UCC)
Patient perceptions and expectations of a Maternity Electronic Record, 2017
Data Sharing

7. • Administration Data
• Clinical Data
• Laboratory Data
• Imaging Data
• Medication Data
• Audit Data
• Metrics
• Research Data
• Paper/Electronic/Mixture/
Human
Every day we collect vast
quantities of data on
individuals
Health Service Data in Ireland
• Working in silos
• Duplication of data,
laboratory tests, radiological
studies, medical
prescriptions
• Poor Value –
Waste/Overspending
• Poor Service – repeated
request for information
• Poor access
• Risk of patient injury – non-
aligned clinical information
– clinical staff may not have
access to important
information documented by
other healthcare
professionals – e.g.,
allergies,
• Staff risk – poor
systems/poor information –
poor decisions
• Data breaches and loss of trust
Health Data Issues Risks

8. Data Management - a Challenging Journey

9. We need to have staff that are
responsible to assess, monitor and
review data quality.
Health Data & Information Lifecycle
Draft National Standards for Information Management in Health and Social Care Health Information and Quality Authority
• National Legislation/policies
• Enabling Governance
• Staff involvement -
responsibility of ALL
• Improve IT systems –
hardware and software
• Training
Patient/Citizen Involvement
Working with Data

10. General Data Protection Legislation 2018
(European Union):
Data Protection Act 2018 (Ireland).
Data Protection Act 2018 (Section 36(2))
(Health Research) Regulations 2018 (Ireland):
Health Research Consent Declaration
Committee(2022):
Health Information Bill
European Health Data Space
• Sláintecare
• Health Information Bill
• Driving change in the National Health
Information System
• Harnessing Digital – the Digital Health
Framework
• EU Digital Decade 2030 Targets
• Impact of and learning – Pandemic and
Cyber Attack
Publications Data Regulations

11. Data Governance - a system of decision rights and accountabilities which describe
who can take what actions with what information
Data Ethics - defines good practices around how data is collected, shared, and used.
This includes identifying all potential impacts on people – Positive/negative
Data Management - Guidance and resources related to the effective management of
data
Data Standards - establish consistent ways for describing and recording data across
agencies
Data Stewardship - a joined-up, consistent, and transparent approach around how
we collect, manage, and use the data we hold on behalf of patients - includes
developing data policy, infrastructure, strategy, and planning - to ensure privacy &
confidentiality
Data Toolkit (Health Data ‘Authority’)

12. Department of Health Statement of Strategy 2021 -2023
• “A healthier Ireland, with improved health and wellbeing for all,
and with the right care delivered in the right place at the right
time.”
• Key enablers -data, technology, and digitisation,
• “advancement in health systems information, are vital in
underpinning policymaking that is person-centred and
delivers on strategic priorities”.
• Data is also of crucial importance to government for supporting
decision-making, shaping policy and facilitating the effective
delivery of public services.”

13. HSE Corporate
Plan 2021-2024

14. The key areas of consensus from - IPPOSI citizens jury (2021):
We need a connected, quality, digital health information system
We need citizens to be the owners of their own information
We have a collective responsibility to do the right thing
We need to be supported to grow trust and confidence in the State
We need to partner with citizens to design our health information future
We need to treat data as a national resource
We have to make consent the cornerstone of everything we do

15. • We have not invested in health information compared to
other European countries
• There is a need to develop a Health Information Strategy
that takes a holistic and cohesive approach to managing
health information, that is,- how health information is
collected, used and shared for not only primary care
purposes but also for secondary use and research purposes
across public and private healthcare
Health Information and Quality Authority (HIQA) in Ireland
The need to reform Ireland’s national health information system, 2021

16. “is a health-specific data sharing framework
establishing clear rules, common standards and
practices, infrastructures and a governance framework
for the use of electronic health data by patients and for
research, innovation, policy making, patient safety,
statistics or regulatory purposes.”
European Health Union: A European Health
Data Space for people and science (EHDS)

17. • The EHDS and its implementation at national level could address
more specifically citizens’ needs to be informed about the secondary
use of health data.
• It could also push for determining and including the value of the common good in this overarching
framework, as well as fostering a plurality of views in decision-making processes and governance.
• Overall, the proposal and its implementation could push for citizens
to be treated as equal partners.
• Ensure that key concepts like privacy, consent, control, commercialisation, the common good, purpose,
etc. respect citizens’ conceptualisations, values and principles.
• Special attention could be given to their concerns regarding
identifiability,
• The establishment of effective sanction mechanisms as well as the guarantee that technical, protective
safeguards are in place
European Health Union: A European Health Data
Space for people and science (EHDS)

18. • Using data means using a part of their Identity
• Secondary use is a relationship
• Power to do good v’s Power to do harm
• Data is Power - Risk Mitigation v’s Benefits maximization
• Transparent accountability & sanctions
• Protect Identity – Regulatory and Good IT solutions
• Dynamic Regulatory Framework driven by citizens
• Values and Principles – Secondary use in EHDS
What does Reusing Health Data Mean?
Healthy Data (ourhealthydata.eu)

19. Data Collection to
ensure Value Based
Care
Focus on the Outcomes
Data Collection
focus is to
measure inputs
The Emphasis is in the wrong place?
V

20. Traditional Care
• Organized around specialties and
interventions
• Duplication across sites/facilities
• Sites provide care for multiple acuity
levels
• Limited Integration
• Siloed Data and IT systems
Value Based Healthcare
VBHC Principles
 Multidisciplinary teams managing full care
cycle with the patient
 Allocate services to sites based on
complexity, risk and patient convenience
 Incorporate all modalities of care
 Use Formal systems to allocate patient
care to most appropriate site
Clinically Integrated Care Delivery System
Dependency – Enabling Health Information
Technology

21. Evolve from eHealth to Digital Health
‘Digital Health strategy’
Move from ‘Digital Transformation’ thinking to
Healthcare Transformation enabled by Digital –
Move the emphasis towards data and data flow rather than the tools

22. • Common Culture and Values across the Healthcare system with full
involvement of the patient/citizen in their healthcare & data
• Full commitment to Slaintecare as a VBHC concept
• Accurate data, seamless data flow and data sharing
• Enabling Governance Structure for Health Data
• Clear Health data Toolkit
• Focus on high quality healthcare data for primary use
• See data as a National Strategic Asset
The Route to high value data Sharing

23. Data Flow and Data Sharing
• A single digital longitudinal record of a person’s health data
• To improve data flow
• Reduce fragmentation & barriers to data flow
• Information sharing across the system
• Legislation 
• Enabling Data Governance
• Data standardization
• Data Management including data quality
• Interoperability Standards
• Agreed consent approaches
The Route to high value data Sharing

24. • A patient/citizen centric model of health information
• Patients/citizens need to be able to access their information:
• understand the information held on their behalf
• consent to its use(s)
• Equally important to the health of the patient/citizen is a clear
understanding of what is happening to their data
• Build Trust & Confidence around our personal/health
data/information
• Legislation
• Secure systems and audit processes
The Route to high value data Sharing

25. Data Sharing - in the words of others
• “They assume that you as the patient
know nothing and they know
everything because they have got the
information.”
• “We are being told that we have the
right to access our health data but why
then is the process of accessing it so
difficult?”
• “I do believe there's an obligation that
our data should be for the benefit of
our citizens.”
IPPOSI Report of a Citizens’ Jury, 2021
• “I don’t mind giving information if its
medical information, but I would be
very concerned if it was going to come
back and bite me in a court of law.”
• “I don’t ever remember being asked to
sign anything that would allow my data
to be shared” (that would help myself
or others).
• “If they were able to go in and bring up
my files electronically and know this, it
will tell them. Instead of me spending
half an hour or an hour talking to a
doctor, then talking to another doctor
then explaining to the consultant……”

26. Data Sharing - a Team Effort