Abstract
Aged care in Australia has historically operated in the shadow of health care. However, recent dramatic changes have raised the profile of aged care into the spotlight, due largely to the devastating impact of the COVID-19 pandemic on the older population and the alarming findings of the Royal Commission into Aged Care Quality (2021). However, the impetus for change had already been intensifying.
Policy development, regulation and funding of aged care services is the responsibility of the Australian Government (Australian Government Department of Health, 2021: 9). Since the late 1990s, in response to the challenges associated with the expanding population of older people, Government policy has aimed to keep people living at home for as long as possible by increasing funding for care and service delivery in the home and community (Australian Government Aged Care Financing Authority, 2020: 7). With residential aged care only being available for those with the highest level of care needs, there has been an increasing complexity in the needs of older people living in the community. Consequently, there is a heavy reliance on a broad range of aged care services for those who are living in their own homes, and increased acuity in the needs of residents in care. The result is an aged care sector of many fragmented parts, which presents a myriad of difficulties for older people and their families, for aged care providers, and indeed for governments in planning, funding, and managing services (Davis et al., 2017). To ensure older people have choice and access to appropriate and timely care that delivers the most optimal outcomes, there is a critical need for improvement in aged care health information systems (Sendall et al., 2017).
A Virtual Special Issue of the Health Information Management Journal on The Emergence of Health Information in Aged Care, guest edited by Carol Loggie and Jenny Davis, includes recent articles that explore different aspects of information systems and technologies for aged care across three main themes: considerations for the needs and key issues of health information in aged care; innovation and progress in the sector; and future opportunities (see Box 1). Together they highlight the key issues and provide a comprehensive overview of the current context and implications for the future.
Alsahafi YA, Gay V and Khwaji AA (2022) Factors affecting the acceptance of integrated electronic personal health records in Saudi Arabia: The impact of e-health literacy. Health Information Management Journal 51(2): 98–109. Cilliers L (2020) Wearable devices in healthcare: Privacy and information security issues. Health Information Management Journal 49(2/3): 150–156. Crameri K, Maher L, Van Dam P, et al. (2022) Personal electronic healthcare records: What influences consumers to engage with their clinical data online? A literature review. Health Information Management Journal 51(1): 3–12. Henderson J (2021) Patient privacy in the COVID-19 era: Data access, transparency, rights, regulation and the case for retaining the status quo. Health Information Management Journal 50(1/2): 6–8. Hollo Z and Martin DE (2021) An equitable approach to enhancing the privacy of consumer information on My Health Record in Australia. Health Information Management Journal. DOI: 10.1177/18333583211019764. Walsh L, Hemsley B, Allan M, et al. (2021) Assessing the information quality and usability of My Health Record within a health literacy framework: What’s changed since 2016? Health Information Management Journal 50(1–2): 13–25.
Cappetta K, Lago L, Potter J, et al. (2022) Under-coding of dementia and other conditions indicates scope for improved patient management: A longitudinal retrospective study of dementia patients in Australia. Health Information Management Journal 51(1): 32–44. Davis J, Morgans A and Burgess S (2017) Information management in the Australian aged care setting: An integrative review. Health Information Management Journal 46(1): 3–14. Henderson J (2021) Patient privacy in the COVID-19 era: Data access, transparency, rights, regulation and the case for retaining the status quo. Health Information Management Journal 50(1/2): 6–8. Sendall M, McCosker L, Crossley K, et al. (2017) A structured review of chronic care model components supporting transition between healthcare service delivery types for older people with multiple chronic diseases. Health Information Management Journal 46(2): 58–68.
McGrath N, Foley B, Hurley C, et al. (2022) A multi-method quality improvement approach to systematically improve and promote the quality of national health and social care information. Health Information Management Journal 51(1): 50–56. Stubbs JM, Assareh H, Achat HM, et al. (2020) Verification of administrative data to measure palliative care at terminal hospital stays. Health Information Management Journal. DOI: 10.1177/1833358320968572. Vasco Santos J, Martins FS, Lopes F, et al. (2021) Discharge status of the patient: evaluating hospital data quality with a focus on long-term and palliative care patient data. Health Information Management Journal. DOI: 10.1177/18333583211054161. Woods JA, Johnson CE, Allingham SF, et al. (2021) Collaborative data familiarisation and quality assessment: Reflections from use of a national dataset to investigate palliative care for Indigenous Australians. Health Information Management Journal 50(1/2): 64–75.
Cilliers L (2020) Wearable devices in healthcare: Privacy and information security issues. Health Information Management Journal 49(2/3): 150–156. Hay P, Wilton K, Barker J, et al. (2020) The importance of clinical documentation improvement for Australian hospitals. Health Information Management Journal 49(1): 69–73. Henderson J (2021) Patient privacy in the COVID-19 era: Data access, transparency, rights, regulation and the case for retaining the status quo. Health Information Management Journal 50(1/2): 6–8. Pine KH, Landon LA, Bossen C, et al. (2021) Innovations in clinical documentation integrity practice: Continual adaptation in a data-intensive healthcare organisation. Health Information Management Journal. DOI: 10.1177/18333583211067845.
Alsahafi YA, Gay V and Khwaji AA (2022) Factors affecting the acceptance of integrated electronic personal health records in Saudi Arabia: The impact of e-health literacy. Health Information Management Journal 51(2): 98–109. Davis J, Morgans A and Burgess S (2017) Information management in the Australian aged care setting: An integrative review. Health Information Management Journal 46(1): 3–14. Hollo Z and Martin DE (2021) An equitable approach to enhancing the privacy of consumer information on My Health Record in Australia. Health Information Management Journal. DOI: 10.1177/18333583211019764. McGrath N, Foley B, Hurley C, et al. (2022) A multi-method quality improvement approach to systematically improve and promote the quality of national health and social care information. Health Information Management Journal 51(1): 50–56. Walsh L, Hemsley B, Allan M, et al. (2021) Assessing the information quality and usability of My Health Record within a health literacy framework: What’s changed since 2016? Health Information Management Journal 50(1–2): 13–25.
Considerations for health information in aged care: needs and key issues at three levels
Consumers and their families and carers
Older people are among the most vulnerable in our community. They can often have multiple chronic health conditions with complex care needs, requiring frequent interactions with a broad range of health and aged care services. Electronic health records provide the opportunity for consumers to have increased access to and control over their health information (Alsahafi et al., 2022), and indeed the National Digital Health Strategy states that “safe, seamless and secure” digital health is the “key to improving service delivery and health outcomes” (Australian Digital Health Agency, 2017: 3). However, older people, who potentially have the most to gain from such a system, are also those who can have limited access to, or understanding of, information technology and data privacy and security.
The Australian Digital Health Agency was established in 2016 to oversee the operation and development of the My Health Record (MHR) system, but uptake of the MHR by consumers has been notoriously slow (Hollo and Martin, 2021). The barriers to engagement with electronic health records have been reported in several studies. User competency was found to be a significant barrier in the “behavioural intention” of consumers to adopt an electronic health record (Alsahafi et al., 2022: 98), which was also one of the key factors identified by Crameri et al. (2022), along with age, health status and access to technology. Other key factors are the consumer’s views on the benefits to them in being engaged with their electronic health record, and their feelings around empowerment and personal responsibility (Crameri et al., 2022). Analysis of the quality and usability of MHR for people at risk of low health literacy, including older people, demonstrated that their needs were not being met regarding access and use (Walsh et al., 2021).
Issues around privacy and consent in relation to MHR were explored by Hollo and Martin (2021), with a finding that protections could be compromised for some consumers, and as the uptake of digital health information expands the data security risks for older people could become more widespread (Cilliers, 2020). Concerns around how rapid changes in the sharing of health information during the COVID-19 pandemic “moved the goalposts” were noted by Henderson (2020: 6) with a call to address issues around the privacy of health information.
Providers of aged care
The care of older people with multiple health conditions and support requirements is complex. Providing high quality care is reliant on access to accurate, complete and timely information as consumers move between different providers and service types, including primary care, community and residential care and inpatient care. A review by Sendall et al. (2017) explored strategies to better cater to the healthcare needs of older people and support improved outcomes, such as the sharing of clinical information and community linkages. Davis et al. (2021) reported on the potential for technology to improve the quality of aged care in residential and community care settings, but identified barriers related to access and limitations around aged care information systems and processes. This requirement for integrating health information systems and technologies was recognised by the Royal Commission into Aged Care Quality and Safety (2021), with specific recommendations made around universal adoption of the MHR and the use of interoperable digital care management systems by the aged care sector, as well as reporting protocols for residents transitioning between hospital and residential aged care (p. 252–253).
Of course, these are complicated and challenging undertakings. Henderson (2021: 7) raises issues around the “trade-off between privacy and access to information” which need to be examined as health data becomes increasingly accessible. Considerations around accuracy and completeness are also critical in the development of integrated health information systems. For example, Cappetta et al. (2022) report on deficiencies in the identification of dementia in a longitudinal study of 10 years of coded hospital admission data, highlighting missed opportunities for management of the condition.
Planning and management at the “system” level
Reliable and accurate information is essential for the research, planning, funding and improvement of aged care services, as acknowledged in the Royal Commission into Aged Care Quality and Safety (2021) with a recommendation to improve data collected at the Australian government and jurisdictional levels to monitor the interaction between the health and aged care systems (p. 252). While historically there has been a lack of a comprehensive data framework for aged care, there are various national datasets available that can be utilised. However, it is important to ensure that the data and quality is fit-for-purpose (Davis, 2017; McGrath et al., 2022).
Administrative information, such as discharge destination, is of value in analysing the utilisation of aged care services when reported accurately (Vasco Santos et al., 2021). Stubbs et al. (2020) also highlighted the importance of administrative data quality in an analysis of palliative care use in hospital stays comparing the assignment the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Australian Modification palliative care diagnosis code Z51.5 with the documentation of inpatient palliative care activity. Data quality was also the focus of a systematic examination of a national dataset to investigate palliative care for Indigenous Australians (Woods et al., 2021) which concluded that the secondary use of such datasets could contribute to the improvement of the data quality through a data quality feedback process.
Innovation and progress in aged care health information
Following many years of neglect there is long overdue recognition and activity being directed to health information in aged care, driven by both reforms of the sector and new technologies (Cilliers, 2020; Henderson, 2021; Pine et al., 2021). In response to the recommendations by the Royal Commission into Aged Care Quality and Safety around the universal adoption of digital technology, the Australian Government Department of Health and Aged Care (2022) and the Australian Digital Health Agency (2022) have been working with industry to develop digital information in aged care, including interoperability with external systems such as the MHR and quality indicator reporting to government, as well as clinical care systems, including smart technologies for surveillance and monitoring.
In addition to advancing the digitalisation of aged care information, there has also been innovation in the information that is collected for aged care. A new casemix classification to be implemented in residential aged care from 1 October 2022 was developed to provide a valuable evidence base about the care needs of aged care residents to inform funding, management and quality improvement in the sector (Eagar et al., 2020; Loggie, 2020). Programs for improvement in clinical documentation have also emerged as an important strategy in response to the changing imperatives for complete and accurate health information (Hay et al., 2020; Pine et al., 2021).
Future opportunities in aged care
The transformation of information systems in aged care finally has momentum. Pressure on governments for reform, advances in technologies, recognition of market potential and increased community expectations for high quality and safe aged care will all ensure ongoing advancement in the sector. There are many potential benefits in outcomes for older people and those that care for them, as well as aged care providers and funders, and the opportunities for improvement in the sector are far-reaching (Alsahafi et al., 2022). However, it is critical that the fundamental issues regarding information privacy and consent, as well as data security, quality and integrity, are integral considerations (Davis et al., 2017; Hollo and Martin, 2021; McGrath et al., 2022; Walsh et al., 2021).
The future for aged care is both optimistic and exciting. The articles included in the Virtual Special Issue on The Emergence of Health Information in Aged Care provide insights into the many opportunities for the development of health information in aged care. The issues reported by the included authors highlight the many considerations in ensuring that older people, who are necessarily reliant on the very complex sector that is aged care, must be catered for and protected. The Health Information Management profession should be immersed in this emerging field to provide leadership and expertise in ensuring that the underlying principles of health information are preserved, while providing systems that offer the best possible outcomes for all involved, most particularly, our ageing population.
