Human Genomes Platform Project: Data Access Committee Management Systems Candidate Solutions Evaluation Report

The Human Genomes Platform Project (hereafter ‘HGPP’ or ‘the project’) is a collaborative research project aiming to enhance the secure and responsible sharing of human genomic data for research purposes. National and international connectivity is important to maximise the utility of these sensitive and valuable assets. HGPP partners represent many of the largest human genome sequencing and analysis organisations in Australia.

Navigating restrictions on data use is a major challenge in human genomics. Data Access Committees (DACs) spend significant effort assessing the merits of applications and determining whether to grant access to data sets. Historically, DAC activities have consisted of numerous manual steps, making the process slow, burdensome, and largely opaque to the applicant. 

The DAC Automation sub-project within the HGPP explored a new data access request and approval paradigm driven by automation to streamline the process for the national human genomics research community. Our aim is to enable the DAC to quickly and easily determine whether access is permitted for the requested purpose when an individual, such as a researcher, applies for access to data.

Beginning with a knowledge discovery phase, the project team mapped the current state for data access requests and data sharing, and documented a set of problems, user stories, and requirements for further exploration. We prioritised requirements for our target solution and grouped the desired requirements into a number of themes. Outcomes and insights from this phase are documented in the preceding Discovery Phase report.

This report builds on the discovery phase to examine methods and software solutions for implementing a DAC management system, and evaluates them against our requirements. Our analysis and assessment was brief for patently unsuitable candidates but more credible alternatives were evaluated in detail. While no single system satisfied all our requirements, the Resource Entitlement Management System (REMS) software proved to be the best fit. Despite some shortcomings, the conclusion from our pilot evaluation is that REMS is a workable production solution.

We adopted REMS as our software solution to support a DAC management system pilot in the project. This report details a comparison between REMS and requirements identified in the discovery phase of the project. We conclude with a technical discussion of the pilot solution, outlining the deployment process and other technical aspects examined during this project.