Aged care: put your data where the care is

PERHAPS instead of thinking about the national aged care data as an asset, we need to be thinking about what data the nurses and carers need at the bedside, in the corridors and the dining room and recreational spaces of aged care in order to meet the needs of the originators of the data: the residents themselves.

Recommendation 108 (here, p 279) from the Royal Commission into Aged Care Quality and Safety relates to data governance and a national aged care data asset; Recommendation 109 (here, p 283) relates to information and communication technology architecture and investment in technology and infrastructure with a need for “data and information that are accessible, complete, accurate and up to date”.

This all sounds much easier than it is.

When experts write and talk about “aged care data”, they generally fail to define what type of data they are talking or writing about. As most public debates are conducted by policymakers, program managers, or researchers, the implicit frame is national data for program monitoring or annual reporting, or regulatory compliance or the transfer of data between systems – from health to aged care for example, as was the intent of the electronic health record.

What they are not talking about is the data use at the bedside or the corridors or the communal space for documenting, guiding and providing care — the point-of-care data that are the heart of both quality and efficiency in residential aged care.

Point-of-care data tell the nurse or personal care worker what care is needed, when it is needed, and how it should be delivered to that particular person — this information is at the heart of “person-centred care”.

Debates aimed at improving the quality of information in the sector would benefit from a typology of aged care data with clearer terminology — one that takes account of what is the source of the data, the purpose for which the data are collected, who will be using them, at what level and when. Until such a typology is developed and agreed, debates and recommendations should at the very least take account of the different purposes for which aged care information is collected:

1. direct care management (daily resident focus);
2. indirect care management (resident history, key contacts);
3. resource management (environmental or organisational focus (beds, staffing, support staff);
4. regulation (quality oversight);
5. financial claim system (Aged Care Funding Instrument or, from October 2022, Australian National-Aged Care Classification);
6. statistical reporting (program management and research).

The Commission’s recommendations are detailed and thoughtful. The emphasis is on the collection and production of aged care-related information and statistics for the purposes of research and analysis into the functioning of the aged care sector, drawing information from providers, and the prevailing regulatory mechanisms as they pertain to both quality and financial matters. There is also a strong emphasis on access to aged care data and the “interoperability of information and communication systems” to enable the sharing of data and information about people receiving care between aged care and health care providers and relevant government agencies.

The Government Response to Recommendations 108 (here, p 70) and 109 (here, p 73) focuses on access and interoperability, including “seamless exchange of data and interoperability of information about aged care recipients” and the further extension of “various public-facing data activities”. The focus in both cases is on data collected on purposes 3–6 of those outlined above — on resource management, regulation, financial claims, and statistical reporting for program management and research purposes. The focus does not fit with the kind of data required for resident management and care management systems: how many residents, what the resident’s preferred/home language is, who their doctor/nurse practitioner is, what their medical conditions are, and importantly, what their day-to-day health and care needs are.

We have no quarrel with the recommendations and responses per se, but rather with what appears to be under-recognised in these national debates: that the primary purpose of personal health care data is personal health care. Data need to be collected for a variety of purposes in aged care, but it is important that innovation in the information systems needed for direct and indirect care of the resident (purposes 1 and 2 above) are not neglected in planning for a future of system interoperability and sophisticated information technology architecture. Digital information systems at the point of care have the capacity to improve the quality of care received by people living in residential aged care, the efficiency with which it is delivered and to improve workflows for the staff who are providing care.

We need more emphasis on innovations in collecting and accessing the data on the person, at the point of care, for the benefit of the person, as well as the more commonly recognised focus on data to monitor and evaluate at the system level. We need improvements that focus on facilitating front-line staff to manage complex decisions and deliver person-centred care in order to inform responsive care rather than a focus on reactive regulation.

Improvements in health information systems to support care delivery have been relatively slow to develop in the residential aged care setting (here and here). While many aged care services use electronic records to some degree, the level of person-centredness and of nurse/carer workflow friendliness varies enormously. Most have never been evaluated as to how effective, satisfactory or efficient they are in achieving decent health outcomes for residents, and satisfying workflows for staff. Health information systems offer an opportunity to contemporaneously capture care delivery, streamline documentation, and provide point-of-care evidence-informed decision making to optimise holistic person-centred care. However, the implementation of such systems into existing health organisations is challenging due to cultural, care processes and governance structures which may have limited input from aged care recipients, care workers and front-line nurses and members of the multidisciplinary team.

For digital records to be used for care management, the records need to be sufficiently detailed for nurse practitioners, GPs, allied health professionals, care workers and nurses to be able to use them. The bulk of care workers’ and nurses’ time is spent either with the resident or their significant others (GPs/family); accessing documentation about the resident; or documenting those interactions. Arguably this digital space is not just an augmentation of the work, but is the very core of the work itself. Nonetheless, it is critical to minimise duplication — as additional data requirements are added to the system, more time is directed away from care to meet new data requirements.

Let’s face it, the fact that we have just spent $100 million to find out that there were not enough staff and that staff were not paid enough and were not skilled enough demonstrates that we are worried about the efficient use of the most expensive resource in aged care: the staffing.

If we want care delivery to be efficient, then we also must pay more attention to how care is documented and delivered. We need to ensure that there is no duplication of data entry, minimise the duplication of assessments by the skilled and limited numbers of health care professionals, and minimise the waste of time when nurses are doing auditing documentation in addition to care documentation.

Care documentation needs to be well designed and available at a single point of entry for multiple use. It needs to be easily accessible, and it needs to make ready sense for the population using the device. It needs to be easy to use and not take any more time away from the residents.

One specific component of Recommendation 109 of the Royal Commission is:

a new service-wide client relationship management system interoperable with My Health Record for care management, case monitoring and reporting systems built around older people’s care, that would move progressively to real-time and automated reporting within five years

Our research over the past 2 years suggests that the basis for a care management system that supports older people’s quality of care needs to be built from the ground up, with a focus on care and involving a co-design process between information technology experts, nurses, managers, care workers and residents, as well as the researchers involved in a formative evaluation of the implementation process. It is not something that will evolve out of a national data management system, and be progressively moved to real time over a 5-year period, because it has to begin with a real-time resident-centred focus. And we have found that such a system is not only feasible, but also highly accessible, and brings benefits in quality and efficiency.

Our research found a 20% saving of nurses’ time, using a digital system that was co-designed with users (Humanetix ACE). Not only did the duplication cease, and the searching for information decrease, but the person – their history, preferences, and key information – could be accessed at the fingertips of the staff member. Whether this was the blanket colour preference; most suitable distraction technique if behaviours were escalating; new alerts regarding a change in thickened fluids to prevent pneumonia; or a change in resuscitation status – staff were able to design the information access to best suit their needs, so that they could arrange their workplace to best suit the residents’ needs.

The proportion of residents with high care needs across all care domains has increased almost eight-fold in the last 10 years, demonstrating a substantial increase in the complexity of care. Meanwhile the proportion of staff that is registered nurses has halved. Nurses are now nominally supervising more staff than ever before, and consequently have even less oversight. Technology offers a unique potential for assisting nurses to do their work, but not in the robotic or assisted living lens so often prophesised.

There is so much work to do in identifying inefficiencies in current nursing workflows, in accepting what are necessary and functional interruptions, and what could be minimised. Starting with a system that has been designed for both sets of humans on the floor of aged care facilities – resident and care staff – shows promise in actually making a difference in the efficiency and effectiveness of the “care and information exchange” that is residential aged care.

If we want care to be “person-focused”, then we need data that are collected about what that person’s preferences, likes, dislikes and goals are. If we want the care to be “individualised”, then we need data platforms to have that as a basis for their collection, and nurses and care workers at the forefront of accessing, entering and, most importantly, responding to that data.

Kasia Bail is Associate Professor of Nursing at the University of Canberra, known for her research with older people, health services, nurse sensitive outcomes, and health information systems.

Diane Gibson is Distinguished Professor of Health and Ageing at the Health Research Institute, Faculty of Health, University of Canberra.

With acknowledgement to ACE by Humanetix and Jindalee Residential Aged Care Services, and Commonwealth funding of the program.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.