Clinical quality registries: The opportunities and the challenges

In order to have a world class healthcare system there has to be a way to objectively monitor health outcomes. Are procedures for heart disease safe and effective? Does spine surgery actually improve quality of life? Is there equity of access to necessary cancer treatments?

There are 111 activities that identify as Clinical Quality Registries (CQRs) in Australia, according to the Australian Commission for Safety and Quality in Health Care. They monitor the effectiveness and efficacy of care from a range of procedures and diseases.

Recently, Monash University’s School of Public Health and Preventive Medicine secured four-year funding in the Federal budget to support its Commonwealth-funded national Clinical Quality Registries (CQRs).

"Monash University manages 45 of the 111 national registries and is the largest academic provider of CQRs in Australia, and one of the largest internationally."

The CQRs in the school covered by the funding announcement include those focused on dementia, cystic fibrosis, and pelvic floor disorders, as well as diabetes, cardiac procedures, trauma care, breast devices and spinal surgery.

The funding is a recognition of how important these registries are in driving improvements in the safety and quality of healthcare experienced by Australians.

Registries like these are important because they systematically monitor the quality of healthcare by routinely collecting, analysing and sharing standardised health-related information. This information is reported back to contributing healthcare sites, providing them with national benchmarking to help guide improvement, with the aim of ensuring patients receive the best quality medical procedures and treatments.

Monash University manages 45 of the 111 national registries and is the largest academic provider of CQRs in Australia, and one of the largest internationally.

Clinical registries have been with us for decades, and one of the first in Australia was the Australian Cystic Fibrosis Data Registry (ACFDR), which started collecting data in 1998.

Registries were originally developed as a way to monitor a disease, treatment or device over time – the key to registries is that they map the natural history of a cohort of patients, so that we may better understand a disease and the impact of treatments for it.

The ACFDR has tracked the health outcomes of new genetic therapies that have contributed to often significant improvements in people with cystic fibrosis (CF), which affects more than 3500 people nationally.

The ACFDR has seen improvements in overall lung function and nutritional status, a reduction in hospitalisations, a major drop in the number of people requiring lung transplants and – most important of all – a sustained increase in life expectancy.

Registries like the ACFDR are more than just monitors of new therapies for people with CF. They have the capacity to be highly agile as shown during the COVID-19 pandemic, when health services suddenly shifted to telehealth services - instead of in-clinic visits - which were previously not considered ideal for people with a serious, chronic respiratory condition. However, analysis of data from the ACFDR showed that outcomes from telehealth during the pandemic for people with CF were no worse overall than in-clinic visits.

The ACFDR is undertaking further analysis to determine disease and health service factors that are optimal for ongoing delivery of telehealth, which may be preferred by people with CF.

The challenges

Yet with increasing relevance and importance of clinical registries, comes challenges. Registries by definition are long term, so they require ongoing funding, and increasingly this involves complex governance and reporting requirements as multiple funders are involved.

Then there are increasing costs associated with the management and security of large amounts of health data, within an overarching ethical and privacy framework. While clinical registries support and encourage secondary use of their data, increasing requests for data sharing also requires additional resourcing.

Also, registries tend to fall between the funding cracks: with core funding not covered in most research grants, even when crucial to the research being funded. This has limited the ability for researchers to undertake methodological research on clinical registries, which is an area of growing importance given the size of the sector.

While individual clinical registries may have opportunities for improvement, they remain a critical component of a high-functioning, outcomes-focused health system. Ultimately, clinical registries have the potential to be incorporated into, and complement, Australia’s existing administrative health data systems.

But at the heart of clinical registries, and what garners them the trust and support of most clinicians – is that they are established and run with strong clinician leadership, they operate at scale, frequently nationally, and enhance a community of practice and a shared understanding about the processes and outcomes in relation to specific clinical conditions.