Perhaps more than any other issue, health care is a central concern for governments and individuals alike. That is because all of us, to varying degrees and at different points in our lives, need the ministrations of the health care system.
By most definitions, standards of health care in Australia are high, as evidenced by morbidity, mortality and life expectancy tables and by benchmarking against other developed countries.
This is neither an easy nor a cheap achievement. The level of expenditure on health is increasing in absolute terms and as a proportion of GDP in most countries.
Defining The Problem
Health systems in developed countries typically handle high volumes of complex data and information, generated in Australia by thousands of health care providers, ranging from a country practice with one general medical practitioner (“GP”) to large city general hospitals with thousands of staff.
That information must be passed on accurately and securely, within a system that is often funded from mixed sources, partly private and partly public, but largely managed by state entities, and where the many professions involved have widely differing standards and practices.
The system is characterized by a plethora of technical and professional standards competing for primacy, rising expenditures and expectations, and a focus on cure rather than prevention.
Generally, governance in health care remains fragmented and confused, although there are significant recent efforts to provide a space for coherent and cohesive action, as discussed below. There are significant public policy incentives for changes to the status quo, usually driven by a desire to cut or contain costs or conversely to invest in new facilities or new equipment.
But money is not everything. Privacy is also a great concern in the realm of health care.
The average person wants to be sure that his or her private health information stays private. At the same time, the average person wants health care professionals to provide seamless, coordinated health care and expects that anyone defrauding the system will be caught swiftly (and cheaply). Achieving the latter objectives requires personal data to be available to an ever-increasing circle of people, placing privacy at risk. Reconciling these conflicting expectations is not an easy task.
The Way Forward
Managing health data is a complex problem or, rather, a set of interrelated, complex problems. Structuring an approach capable of resolving these problems is not an easy thing to do and no country in the world seems to have the complete solution. However, there are lessons to be learned from scanning the environment, to see if parts of the solution already exist. A program run by the Irish Government, called Reach (Reach), provides a useful starting point.
At the heart of Reach is the role of Public Services Broker. This electronic broker acts as a helper or assistant between clients/customers and public service agencies. The role is being developed by Reach and will then subsequently be operated by a separate agency.
The Public Services Broker will provide a single mechanism for access to public services to improve service delivery through traditional means (in person and on the phone) and new self-service electronic channels.
The model proposed in this paper (below) draws on the concept of an electronic broker, as the foundation for an integrated approach to the management of personal health data and information, but it goes further. The model is predicated on the guiding principles outlined below, which have been structured to accommodate the complex set of policy objectives discussed earlier. These principles take us beyond the Reach model.
Guiding Principles
The principles guiding the development of the proposed model are:
- The management of personal (health) data should not be a service provided exclusively by government.
- Government should be responsible for the provision of a national framework of trust, covering privacy, security and authentication.
- Government should have the responsibility to regulate the collection, management and access to personal data.
- The individual should control his/her data, by setting parameters for access.
- National data standards should apply (covering both technical and management requirements).
- National privacy standards should apply.
- Protection of individual rights established by these principles should be universal.
- Access to data by service providers should be universal and ubiquitous (subject to 1).
- Risk and risk management should be scalable.
The Model:
A Model To Manage Health Data
Individual recipients of health care services are not shown in the diagram, as the model envisages the individual (see below) as the person who controls the flow and access to his/her data, rather than as a user of health data.
To protect the interests of individual citizens and of users of the system in general, a national regulator would oversee the system, giving effect to the principles underpinning a National framework of trust: protecting privacy, ensuring security, and enabling authentication. The regulator would oversee the operations of the data brokers, issue licenses, conduct audits, impose sanctions and so on.
