Beyond the first 2000 days: exploring the potential for a child digital health record

26 Feb 2020

Health records covering the period from the birth of a child to four years of age – the first 2,000 days of life – have been a standard feature of health care in Australia for many years. These parent-held records document the child’s immunisations, developmental checks and other major health events and facilitate communication and information-sharing between parents and health care professionals. However, no similar widely implemented record exists for older children. A complete digital health record that spans the next decade, to age 14 would be expected to have benefits for families, health care providers, and the health system. As well as improving the quality of clinical care, their potential value also lies in generating population-based data for health researchers and policy makers. 

Our ISSR team – Associate Professor Fran Boyle, Dr Julie Dean and Ms Laura Singline – worked with the National Children’s Digital Health Collaborative to scope the policy context and measures and health checks that currently exist and that could be considered for routine inclusion in a digital health record for children in the 5-14 year age group as part of a complete longitudinal record that captures health information across the life course.

Our review confirms strong policy support for a longitudinal health record for children aged 5-14 years. There is broad consensus that child health assessment should be underpinned by a multidimensional and holistic approach that addresses multiple domains of health, wellbeing and development and incorporates social determinants of health. Our review identified 83 assessment tools and indicators. Some may warrant consideration for inclusion in a digital health record for children aged 5-14 though at present it is uncertain how widely or consistently these are used. 

We also highlighted the importance of gaining a detailed understanding of complexities and considerations associated with the implementation context, including how data are collected and used and the importance of understanding motivations, benefits, concerns, and acceptability for users. Critical to successful implementation will be early engagement with users and other stakeholders using co-design processes to address the perspectives of children, young people and families, health care providers, public health researchers and policy makers.