Our new data systems will identify PCOS status and allow unique long-term surveillance of outcomes, providing unparalleled ability to benchmark and improve quality of care.
A key CRE priority is establishing unique high-quality data reporting systems for incidence and outcomes in PCOS – vital tools to improve research and quality of care and currently lacking. Monash School of Public Health is a National Centre of Excellence in registry science and holds 18 registries. Existing national data resources in births and fertility treatments are limited by:
i) failure to measure outcomes systematically,
ii) incomplete national coverage,
iii) an inadequate data set,
iv) lack of benchmarking across providers,
v) inability to identify specific cultural or indigenous groups and
vi) failure to identify PCOS status.
We will progress the establishment of prospective data sets that can be embedded within routine care, contain the minimum agreed data set and can be used to benchmark care against the international guideline. We are part of an international collaborative to develop a core outcome set (COS) for PCOS. This is registered with COMET and well underway. It leverages the work in the guideline and follows best practice. The COS will be integrated into the dataset in the CRE models of care and other centres in the CRE partnership grant and collaborators will be invited to leverage this work.
The data set will be embedded in an accessible REDCap database with access given to all collaborators. Data will be analysed by unique identifiers (per Centre) and reported for benchmarking longitudinally and cross-sectionally. Practice will also be compared to guideline recommendations. Seed funding is from the CRE. Funding submission are in place to expand this activity.
This does not exist anywhere internationally. Our new data systems will identify PCOS status and allow unique long-term surveillance of outcomes, providing unparalleled ability to benchmark and improve quality of care. This can be achieved by noting variation in care, benchmarking outcomes among providers, and noting compliance with guidelines. The proposed data set is a powerful tool directly relevant to improving clinical outcomes, identifying predictors of outcomes, and providing a basis for efficient conduct of clinical trials. Ability to provide outcome measurement facilitates collaborative studies of new biomarkers and diagnostic approaches, forming the basis of cost-effectiveness analyses.