The document outlines a draft health information policy framework in Ireland. It discusses the need for a new policy to provide clarity on processing health information under new GDPR regulations. The framework proposes core principles like accountability, consent and data security. It suggests strengthening legislation to establish a clear legal basis for information sharing. The framework also proposes improved governance structures and operational standards to promote consistent and secure data use across the health system. A public consultation was opened to gather feedback on the draft policy.

1. Draft Health Information Policy
Framework
National Health Information Seminar
4th October 2017
Muiris O’ Connor, Assistant Secretary, Department
of Health

2. Intelligent Use of Intelligent Data

3. Overview of Presentation
 Scope
 Need for a new policy
 Vision
 Core Principles
 Policy Pillars and Proposals
 Public Consultation
 Consultation Exercise

4. Scope
 The scope of the health information policy framework is to ensure that
the health information used for the safe and effective treatment of
patients, the planning and monitoring of health services and the
potential for supporting health research is processed on sound
information principles, has legal clarity and empowers patients and
clinicians.
 The core aim of the policy is to ensure that health information can be
processed in any health care or health-related setting on the basis of
clearly understood processing principles.
 The information policy is being developed to be supportive of and
complementary to other health policy goals, service improvements
and the enablement of eHealth and integrated care through the
appropriate collection, use and sharing of health information.

5. Need for new policy
 Last major statement on health information issues was the National
Health Information Strategy (NHIS) in 2004
 SlainteCare Report 2017 has recommended funding of €875 million for
eHealth and electronic health records. This should be underpinned by
a clear statement of health information policy and a clear legal basis.
 The GDPR must be transposed into all Member States by 25 May 2018
and will require more transparency and accountability around the
processing of personal health information.
 Clarity is needed on the legal basis for processing personal health
information for primary, secondary and research uses.
 Need to address fragmented governance and operational
arrangements for health information.

6. Objective
Where are we trying to get to?
Ideally we need a patient-centred
approach where:
the right information is available for
the right patient in
the right place at
the right time.

7. Policy Framework

8. Core Principles
The following core principles should be applied in all healthcare and
health-related settings to enable a consistent approach to the
processing of personal health information:
Accountability
Access
Data
Quality
Data
Minimisation
Data
Security
Privacy
by Design
Lawfulness
Transparency
Consent
for
Research
Duty to
share

9. Policy Proposals- LEGISLATION
 Will enhance legal clarity on the processing of health information and
information sharing and to support implementation of provisions in
HIPS & GDPR.
 It is an enabler and facilitator to underpin better governance
arrangements, improved operational procedures and enhanced
awareness and education.
 Key proposals include establishing a clear legal basis for:
 the processing of personal health information for the purposes of
preventive or occupational medicine, medical diagnosis, the
provision of health care or treatment, the management of health
systems and services and public interest reasons in the area of
public health.
 A duty to share health information, securely and appropriately,
between healthcare professionals and health service providers for
the above purposes

10. Policy Proposals – GOVERNANCE
 Evaluate the role of a national data advisor (similar to National Data
Guardian in the UK) to advise and challenge the health system to
ensure patient data is safeguarded and used appropriately, with
mechanism for patients to send in data concerns.
 Evaluate the role of an advisory committee, with key expert and
patient representation, to advise the Minister for Health on matters
relating to the processing of personal health information for the
provision of health services.
 Evaluate the role of a confidentiality advisory committee (a sub-
group of Advisory Committee above)to consider consent exemptions
for use of patient identifiable information for research in strict and
limited circumstances. This will replace DPC role in relation to consent
exemptions for research in HIPS Bill.
 Progress a standardised approach to information exchange, data
modelling, coding, information architecture, data security,
interoperability to promote consistency across the system to support
information flows and eHealth.

11. Policy Proposals- OPERATIONAL ARRANGEMENTS
 Determine the optimal oversight arrangements for national
health and social care data collections.
 Determine a consolidated approach for data warehousing of
health information for health research and other health-
related purposes via a secure environment with access and
linkage capacity.

12. Policy Proposals- PATIENT & PROFESSIONAL AWARENESS
 Engage with key stakeholders on their views in relation to the
development of health information policy as part of a public
consultation
 Promote patient empowerment by developing transparency
mechanisms in all aspects of information processing
 Work with other Departments and Statutory bodies to promote health
information policy and impact of GDPR on health data
 Work with healthcare providers and health researchers to promote
staff awareness/training on additional responsibilities for health data
under GDPR and the core principles to be applied when processing
health information

13. What options are available?
 Do nothing :
 GDPR comes into effect in May 2018 and the legal basis for health
information processing and consent for research will continue to
be unclear
 fragmented governance and organisational arrangements
continue and information silos and increasing costs remain
OR:
 Restate health information policy and implement policy solutions to
support an optimum health information landscape in Ireland where
health information is legally used and shared to support public health
by supporting patient safety and a vibrant health research
environment.

14. What does success look like?
 All health information is processed in line with core principles and
these are consistently applied by health services providers,
healthcare professionals and health researchers
 There is a clear legal basis for the processing of personal health
information and clarity around when information can be shared and
for what purposes
 There are robust governance arrangements and organisational
structure for health information with clear lines of accountability
 Healthcare professionals are trained on how personal health
information is to be protected, used, managed and appropriately
shared in the interests of improving public health and patient safety.
 Patients are empowered as to how their personal health information is
to be protected, used, managed and appropriately shared in the
interests of optimising their individual care and improving public
health and patient safety.
 Information flows efficiently and effectively across the public and
private system, supported and driven by eHealth solutions.

15. Public Consultation on Draft Policy Framework
 Opens today for a period of 6 weeks
 Closing date for feedback is close of business, Wednesday 15th
November 2017.
 No late submissions will be accepted
 Link to the online consultation is:
http://health.gov.ie/consultations/

16. Consultation Exercise
 30 minutes discussion
 4 Questions – discuss any 3 (10 minutes per question)
 Nominate a scribe to record feedback and a speaker for your
table
 At the end of the 30 minute discussion, 20 minutes for
feedback from tables
 Please give your feedback sheets to HIQA/DoH staff at the
end of the session
 Overall feedback will be written up and will feed into the
public consultation

17. Questions for discussion…
1.What do you see as the key priorities for
national health information policy?
2.How can the importance and public value
of using and sharing health information be
best promoted?
3.How can the security and privacy of
personal health data be best protected?
4.How can we successfully involve
patients/citizens in deciding how we
appropriately collect, use and share their
information?