Consultation on proposed Health Information Bill
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St. James’s Hospital, James’s Street, Dublin 8.
Observations on Proposed Health Information Bill
St. James’s Hospital welcomes the opportunity to submit observations as part of the
consultation process on the proposed Health Information Bill (June 2008).
Health Information is integral to Patient Care.
The delivery of Healthcare Services is, by its very nature, a knowledge-intensive
process, heavily dependant on comprehensive patient information to meet the
complexity and standards of contemporary clinical practice.
Health Information is at the core of patient care, supporting each stage of the patient
journey. Over recent years, provision of this clinical information at the point-of-care
has become increasingly reliant on Information and Communications Technology
(ICT). Further deployment of ICT in healthcare is now a critical success factor in the
reform and development of Health Services in Ireland and to sustain modern medical
practice. Some examples of current challenges illustrate this key role of advanced
clinical information systems.
o The patient-centric model of healthcare delivery generates challenging
demands in the sharing of patient information between multi-disciplined
healthcare professionals to support a seamless continuum of care throughout
the life of the citizen.
o Modern diagnostic services (e.g. laboratory, radiology, endoscopy), require
close integration with patient information systems to manage complex data
and ensure accuracy and consistency.
o The principle of evidence-based treatments and care-pathways requires a
continuous cycle of clinical audit, outcomes measurement and research, all
based on detailed clinical data from within the patient care process.
Safeguarding patient’s rights versus development of information technologies.
As an overriding principle, the security, confidentiality and fair processing of patient
information is paramount. While patients’ rights in this regard are currently enshrined
in several pieces of legislation, it is very desirable that these rights, and corresponding
healthcare providers’ obligations, be consolidated into a single overarching
framework. This framework is essential to enabling the further development of health
information technologies in key areas such as:
o Clear and comprehensive national governance structures for Health
Information.
o Introduction of a unique Health Identifier to facilitate multi-disciplined shared
care across the continuum of care for the life-time of the patient.
o Establish a standards framework to enable interoperability and consistency of
patient information systems across the Health Sector.
Consultation on proposed Health Information Bill
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o Common data definitions and classifications to underpin standard data-sets for
Shared care, Data Repositories, Health Intelligence, Health Metrics, Clinical
Audit, Casemix, Population Health, etc.
o Consolidation of the various provisions from current different pieces of
legislation into a single comprehensive set of requirements from which clear
best practice standards can be established. This will eliminate current
confusion around exact requirements, and will allow enabling functionality to
be built into Health Information Systems available on the market. e.g.
o Capture of informed consent (implied / explicit).
o Retention period of health records and associated data purging/deletion
functionality.
o Segmenting of clinical records to enable selective access by episode.
o Anonymising or encrypting data.
o Greater granularity in access and navigation of systems.
Comprehensive definition of personal health record.
There is a need for clarity as to what constitutes a personal health record. A
comprehensive definition is required to encompass the multiple elements involved.
A working definition drafted in St. James’s is as follows:
"The Hospital Healthcare Record refers to all information collected, processed or
compiled in the hospital (by all specialities) that relates to the past, present and future
care of a patient, regardless of the medium in which they are held, which may be
stored in different locations linked by a unique identifier. The Healthcare
Record should contain sufficient data to establish the diagnosis and document the
treatment given."
Compliance and Customer Service
Currently, access to personal health records is covered under several different
provisions and can lead to a fragmented service being presented to the customer.
Similarly, organisations may have disparate compliance arrangements under each
legislative requirement. A clear single framework would enable a co-ordinated
organisational approach and an improved customer service.
Conclusion
As a key enabler of healthcare reform and improved patient care and safety, the
development of Health Information systems must not be unnecessarily impeded by
cumbersome or fragmented legislation. The benefits to the citizen of such improved
health services must be balanced equally with the citizen’s right to privacy. Robust
information governance and standards for health information is critical to successful
deployment of the Electronic Healthcare Record.