The iDASH center is leveraging its current development and knowledge to develop open-source software and infrastructure for two supplemental projects:
Informed Consent for Clinical Record use in Research
There is increasing concern that current informed consent models limit the ability of patients to exercise their preferences for data sharing. iDASH will implement an electronic, tiered informed consent system and evaluate it in a single center, single blinded randomized controlled trial. Specifically, we will develop iCONCUR (informed CONsent for Clinical record Use in Research), a software system to assist with patient informed consent of clinical data sharing for research. The system will include a look-up registry (for patients to inspect which studies used which parts of their data) and a tiered informed consent option (for patients to selectively opt-out partially or entirely from data sharing). Additionally, we will estimate financial costs of implementing a scalable system. We will also collect data on patient, provider, researcher, and institutional satisfaction. The results from our study will help elucidate whether the current consent for care forms are adequately capturing patient preferences.
For biologists, establishing how tools should be pipelined and converting outputs from one tool to inputs of another tool is a time-consuming and complex process. This work requires familiarity with scripting and data processing. iDASH will facilitate this process so that biologists can focus instead on interpreting their results. Specifically, we will scale up our current cyberinfrastructure services to include a customizable service platform. We will create an easy-to-use analysis environment for genomics researchers to run predefined workflows. We will also use one genomics use case that requires intensive computing resource and massive storage to demonstrate the utility and capabilities of the iDASH-Cloud. The work from this supplement is available at https://idash.ucsd.edu/idash-cloud