The informatics challenges of chronic disease management
While the infrastructure of our health system is built around hospitals caring for people with acute illness or injuries, there is increasing pressure for services that better respond to the needs of people with chronic conditions. Chronic conditions such as diabetes, cardiovascular disease, mental health conditions and respiratory disease challenge the organisation of the health system due to their long term, persistent nature. The goal of care for chronic conditions is not cure but instead on managing the symptoms of a condition and maximising a person’s health status. Managing a condition requires high quality health information with up-to-date information on a person’s health status and health service use.
Given health care is fragmented across different providers, inside and outside of health care, with an increasing array of digital tools to help track and manage health, the question of how to develop information systems for chronic disease management using multiple data sources is a pertinent one.
We developed a framework to outline four domains to consider in the development of information systems using multiple data sources. We used the Australian private health insurance sector as an example because of their increasing focus on chronic disease management but the framework may be applicable to other health stakeholders.
The framework is shown below.
At the centre of framework is the goal of the chronic disease management program as information requirements and therefore, data sources vary depending on whether the target group for the program are people with a diagnosed/established chronic condition or people who are at-risk of developing a condition.
Information requirements: Demographic and social information, clinical indicators and health service use
Data sources: Data provided by health providers, patients or collected through research
Data quality: Features of the data collection including the original purposes, frequency and level of aggregation
Information systems integration: Consideration for information systems development includes how the person is represented in the data, how data are linked and how meaningful analytics are generated (and who they are meaningful for).
Each of the domains have key considerations for the development of information systems and prioritisation. The aim of the framework is to provide a more structured approach for information systems development in the health sector. Although there is a strong focus on the increasing amounts of data available, there is often little consideration given to how that data is transformed into meaningful, fit-for-purpose information, particularly in the health sector.