Challenges and Opportunities for Clinical Registries Collecting Health Information from Patients – December 13, 2022-Challenges and Opportunities for Clinical Registries Collecting Health Information from Patients

Video Transcription

Video Summary

This enlightening CMSS webinar wraps up a six-month series focusing on registry science and research, particularly emphasizing patient data collection using technology. Hosted by Helen, the session featured several experts: Liz Garrett-Meyer (ASCO), Steve Labkoff (Quantory), Anna McAllister (Consultant), Samantha Robichaux (DataVant), and Leon Rosenblatt (IQVIA).<br /><br />Liz started by discussing the ASCO COVID-19 registry's development. Launched in April 2020, it collects data on over 6,000 cancer patients who contracted COVID. Challenges faced include missing data, over-representation of severe cases, and difficulties in longitudinal tracking due to a lack of direct identifiers.<br /><br />Steve shared insights from building the CureCloud for multiple myeloma. He presented the importance of representative sampling, patient engagement, and collecting broader clinical data. Gamification and regular updates can sustain long-term patient interest.<br /><br />Leon expanded the discussion to direct-to-patient registries, emphasizing novel, diverse data streams like patient-mediated EMR ingestion and at-home sensors. Despite challenges in data integration and consent management, direct engagement can streamline clinical trial recruitment and research follow-ups.<br /><br />Samantha highlighted privacy-preserving record linkage (PPRL) techniques. PPRL using tokenization ensures PII is never exposed, fostering secure, fragmented data integration. Sam advised collecting detailed PII upfront to facilitate future linkages.<br /><br />Anna McAllister closed by stressing patient-centeredness in data collection. Ensuring user-friendly interfaces, contextualizing data relevance, and maintaining transparency in data usage build patient trust and engagement, which are crucial for long-term participation.<br /><br />The session concluded with a Q&A on the complexities and potential business models for sustaining registries, including engaging patients and leveraging privacy-preserving technologies to link data sources securely.

Keywords

CMSS webinar

registry science

patient data collection

technology

ASCO COVID-19 registry

CureCloud

direct-to-patient registries

privacy-preserving record linkage

patient engagement

data integration

clinical trial recruitment

Helen