Opinion: Crisis in long-term care must include data-driven change

More than 19,000 people in Canada have died from COVID-19 – more than 17,000 of them aged over 60 years. The majority of those deaths occurred in long-term care homes. This crisis continues now, even after governments and operators have put in place emergency strategies and, in some jurisdictions, creative solutions to address staff shortages. For example, offering to pay relatives to provide care, creating new support roles with free training and providing salary top-ups.

This response, however, is years late, and piecemeal in its approach.

In June, the Royal Society of Canada released a policy briefing by the Working Group on Long-Term Care which outlined nine recommendations that would go a long way to “not just fix the current communicable disease crisis, but fix the sector that enabled the crisis to wreak such avoidable and tragic havoc.”

The federal government is moving forward, working with the provinces and territories, to forge national standards for long-term care. The creation of the Safe Long Term Care fund will provide significant funding to protect people in long term care. However, these initiatives will not be sufficient to support sustained improvements for residents unless we address two foundational elements of any Learning Health System: comprehensive, quality data, and an ecosystem supporting acting on those data by managers who run the system and the individual LTC homes. These two elements must occur in tandem in an ongoing cycle of learning and improvement.

The long-term care crisis, in part, is a data crisis.

Currently the only systematic, routinely collected data, in most, but not all jurisdictions, focus on quality of care. This is essential, but if it were enough, long-term care would not be in the state it is and Canadians would not be trying to understand why we are the poorest performing country globally in the pandemic’s impact on long term care.

Data must be comprehensive and reliable. It must be collected in all Canadian jurisdictions. It must be reported with transparency. It must be acted upon.

In particular, we must fill four major data gaps. First, we require high quality dementia specific quality of life data – data that will tell us how older adults with dementia (the majority population in long term care) subjectively experience their lives.

Second, we require comprehensive data on our essential direct care workforce. These data include basic demographic information such as race and ethnicity, data on health, well-being and job experiences – essential for workforce planning and for targeting improvement efforts to ensure that the workforce has good work life quality.

Third, data on family and other unpaid caregivers – increasingly known as essential care partners – experiences must be available. Fourth, we require data on the work environment as we know that it strongly affects staff, residents and family. The data, which must be linkable, are a minimum standard for effectively managing the system.

But, if we do not support an ecosystem for acting on data-based findings and trends, if we do not make the findings and trends available to managers at all levels, if there are no supports for them on how to use data for change and improvement – data will do no more than appease our need to be seen to be doing something.

It will not be adequate if all we accomplish are rich databases for scientists to track.

We must have a system that supports data-based action for real change to occur at the point of care. Getting the data, no matter how challenging (it will be) will be the easy part of this equation.

The Royal Society report recommends that federal support of the long-term care sector must be tied to requirements for data collection in all appropriate spheres that are needed to effectively manage and support long-term care homes and their residents and staff. Quality data provided in a user-friendly manner and support to act, will enable managers to develop goals and implement action plans in a process of plan, do, study, act and evaluate cycles of learning and improvement.

Within a group of nearly 100 LTC homes that our pan Canadian, longitudinal program, Translating Research in Elder Care has followed nearly 15 years now, we have developed the foundation for such a system with positive results for managers, care aides, other direct care staff – and residents. It is challenging work but it is achievable.

When a supportive system based on good data works for the managers and staff, the residents have better care, the long-term care system is healthier – and we all do better.

Carole Estabrooks is scientific director of Translating Research in Elder Care and Professor in the Faculty of Nursing at the University of Alberta.