Strengthening Our Community through Impactful Multi-Sector Data-Driven Collaborations

This talk will highlight critical opportunities for cross-sector collaboration and review successful collaborations as models for future success. Additionally, the role of the ASA in fostering and supporting such partnerships will be examined. 

Patient-reported outcomes (PROs) are essential for understanding the impact of cancer treatments from the patient's perspective. However, inconsistent methodologies in PRO data collection, analysis, and interpretation have limited their reliability and utility in clinical decision-making. The SISAQOL-IMI (Setting International Standards in Analysing Patient Reported Outcome and Quality of Life Data – Innovative Medicines Initiative) Consortium was established to address these challenges by developing harmonized international recommendations. This multi-stakeholder collaboration brought together 41 organizations, including regulators, HTA bodies, industry, academia, clinicians, statisticians, PRO experts, and patient representatives. Through inclusive working groups, the initiative fostered cross-disciplinary dialogue, enabling statisticians and PRO specialist to communicate complex methodologies in accessible ways and ensuring clinical and patient relevance in analytical decisions. Building on earlier SISAQOL work, the consortium generated recommendations grounded in the estimand framework to guide robust design and analysis strategies. Key recommendations for randomized cancer clinical trials cover handling intercurrent events and missing data, correcting for baseline variability, and improving longitudinal analysis. By aligning statistical and methodological rigor with clinical relevance and patient experience, SISAQOL-IMI exemplifies how international multi-stakeholder collaboration can help improve the interpretability of PROs in cancer trials, ultimately supporting better-informed treatment decisions. 

Administrative data sources provide a wealth of information and are a valuable resource for research. However, they are limited in the amount of information they capture and may not provide a comprehensive picture. Recently, integrating data from other sources and linking them to child welfare administrative data has been shown to be an approach to address the limitations. In this talk, I will present examples of real-world policy-relevant research projects from my work with a US child welfare system to motivate a discussion on the advantages and challenges of using linked data. I will also touch on the types of research questions that can be addressed through linked data and demonstrate interactive ways of presenting and communicating analysis results.