Clinical data repository

A clinical data repository is an aggregation of granular, patient-centric health data usually collected from multiple IT systems and intended to support multiple uses including real-time access. The term can more broadly refer to any database for storage of clinical information in a computer-based patient record.

Clinical informatics

The application of informatics and information technology to deliver healthcare services, clinical Informatics is concerned with information use in healthcare by clinicians (whether dentist, pharmacist, physician, nurse, or other health professional).

Cloud computing

Cloud computing is a style of computing in which scalable and elastic IT-enabled capabilities are delivered as a service over the internet, rather than being performed on a local computer.

Connecting care

In the context of this guide, connecting care is the process where data and information is connected across health providers to inform decision making, clinical decisions, and ease of process. Connecting and linking care supports patient centred care where the information follows the patient and is also shared and accessible to the patient by health practitioners as part of the care team.

Data

Health data is any data which relates to a person’s health, their interactions with the health and care system, and/or the management of the healthcare system.

Data quality

Data quality is the degree to which a given dataset meets a user’s requirements. In the primary healthcare setting, poor quality data can lead to poor patient care, negatively affect the validity and reproducibility of research results, and limit the value that such data may have for public health surveillance. (National Institutes of Health USA).

Decision making

Decision making is the process by which a person arrives at a decision, blending knowledge, experience, and intuition.

Digital Health

Digital health is an umbrella term referring to a range of technologies that can be used to treat patients and collect and share a person’s health information. (AIHW).

For the AIDH, digital health can be defined as health and healthcare in the context of digital societies. (Rowlands 2020). That is, as we increasingly life digital lives, the use of digital technologies, applications, systems, and data will be commonplace and business-as-usual in health and care provision.

Digital transformation

Digital transformation is the integration of digital technology into all areas of a business, fundamentally changing how you operate and deliver value to customers. It’s also a cultural change that requires organisations to continually challenge the status quo, experiment, and get comfortable with failure.

Health

A state of complete physical, mental and social wellbeing, and not merely the absence of disease or infirmity. Health is a fundamental human right and the attainment of the highest possible level of health is a most important world-wide social goal whose realisation requires the action of many other social and economic sectors in addition to the health sector.

Health informatics

Health informatics is the science and practice around information in health that leads to informed and assisted health care.

(‘Informed’ here means ‘that the right information about the subject (consumer, patient or population) together with relevant health knowledge, is available at the right time and in a form that allows it to be used. ‘Assisted’ here means ‘that the job of the health care worker is made safer and easier and that the health consumer is supported in their decisions and actions’.)

Health worker

In the context of this guide, health worker refers to anyone working in healthcare, whether clinical, administrative, technical, research, education, or support.

Healthcare organisation

Any organisation that manages, coordinates, or has responsibility over the policy, funding, and delivery of healthcare. These include Government Departments, public and private hospitals, primary care practices, aged and community care providers, pharmacy, pathology and diagnostic services, research, education, etc.

Information

Information can be defined as data that has been organised, processed, or structured in a meaningful way to provide context, relevance, and value to a user.

Information theory

Information theory is a process that focuses on the task of quantifying information. The quantification of information is achieved by identifying viable methods of compressing and communicating data without causing a degradation in the integrity of the data. Information theory can be utilised in a number of different fields, including quantum computing, data analysis and cryptography.

As a branch of both electrical engineering and applied mathematics, information theory seeks to uncover the most efficient methods of conveying data, within the limits inherent in the data proper. The goal is to ensure that the mass transit of data does not in any way decrease its quality, even if that data is compressed for transmission. Ideally, the data can be restored to its original form upon reaching its destination. In some cases, however, the goal is to allow data in one form to be converted for mass transmission, received at the point of termination, and easily converted into a format other than the original without losing any of the transmitted information.

Interoperability

The ability of two or more systems or components to exchange information and to use the information that has been exchanged is called interoperability.

Metadata

Metadata is data that defines and describes other data.

Open standards

Open standards are recognised national or international platform-independent standards. They are developed collaboratively through due process, are vendor neutral, and do not rely on commercial intellectual property.

Participatory medicine/health

Participatory medicine/health is a movement in which patients and health professionals actively collaborate and encourage one another as full partners in healthcare.

Personal health information

Personal information includes a broad range of information, including opinion, that could identify an individual. What is personal information will vary depending on whether a person can be identified or is reasonably identifiable in given circumstances.

Health information is personal information about your health or disability. It includes information or opinion about your illness, injury, or disability. (OAIC)

Personal Health Record

A personal health record (PHR) of an individual is a representation of information regarding, or relevant to, the health, including wellness, development and welfare of that individual and for which the individual, or the representative to whom the individual delegated their rights, manages and controls the PHR content and grants permissions for access by, and/or sharing with, other parties. A PHR may be stand-alone or may integrate health information from multiple sources, an individual’s health record in My Health Record is an example of a PHR.

Personalised medicine

Personalised medicine uses knowledge of genomics and other personalised health information to predict disease development, to influence decisions about lifestyle choices and/or to tailor medical treatment to an individual.

The result of personalised medicine is better disease prevention, more accurate diagnosis of disease and more effective treatment of disease by understanding the way specific genes interact with disease progression and medicines.

Pervasive computing

Pervasive computing, or ubiquitous computing, is a computing paradigm that leverages the user interaction with microprocessors or gadgets in an “anywhere and anytime” manner. The users do not need to access a PC or laptop; instead, they can use their body-worn devices. Due to the rapid proliferation of handheld and wearable devices, the Internet of Things (IoT) enabled technology is evolving healthcare in the era of pervasive computing. The development of cloud technology empowers pervasive computing even more by providing communication across different objects for data sharing.

Public health informatics

Public health informatics is the application of informatics in areas of public health, including in surveillance, prevention, preparedness, and health promotion. Public health informatics (and the related population informatics) works on information and technology issues from the perspective of groups of individuals. Public health is extremely broad and can even touch on the environment, work and living places and more. Generally, the American Medical Informatics Association (AMIA) focuses on those aspects of public health that enable the development and use of interoperable information systems for public health functions such as biosurveillance, outbreak management, electronic laboratory reporting and prevention.

Stewardship

Data stewardship is the collection of practices that ensure an organisation’s data is accessible, usable, safe, and trusted. We all play a role in data stewardship as part of our work.

Translational bioinformatics

Translational Bioinformatics is the development of storage, analytic, and interpretive methods to optimise the transformation of increasingly voluminous biomedical data, including genomic data, into proactive, predictive, preventive, and participatory health. Translational bioinformatics includes research on the development of novel techniques for the integration of biological and clinical data and the evolution of clinical informatics methodology to encompass biological observations. The end product of translational bioinformatics is newly found knowledge from these integrative efforts that can be disseminated to a variety of stakeholders, including biomedical scientists, clinicians, and patients.

AHICF

Health Informatics Competency Framework

The Agency

Australian Digital Health Agency

AIDH

Australasian Institute of Digital Health

AMIA

American Medical Informatics Association

CDR

Clinical Data Repository

CHIA

Certified Health Informatician Australasia

CPD

Continuing Professional Development

HIKM

Health Information and Knowledge Management

HIMAA

Health Information Managers Association of Australia

HIMSS

Healthcare Information and Management Systems Society

ICT

Information and Communications Technologies

IMIA

International Medical Informatics Association

PHR

Personal Health Record