Cancer patients’ data, including clinical and genomic sequencing, typically reside within incompatible electronic health records (EHR) and/or proprietary databases in clinical laboratories or companies. Multiple academic and commercial consortia have initiated “top down” approaches to encourage data sharing, though these consortia represent a small percentage of the cancer patient population and may not capture the genomic and phenotypic diversity of the larger cancer community. Critically, patients have the unique power to liberate and share their own data, since the Health Insurance Portability and Accountability Act (HIPAA) gives patients a right to access all data in a computable format. Here, we partnered with patients to examine the feasibility of leveraging the HIPAA right of access provision to access their cancer genomic data in a computable format from both academic and commercial laboratories (n = 5 patients; 3 academic labs, 5 commercial labs). We observed wide heterogeneity in responses to requests, deliverables to patients, and patient effort required to access data. Multiple labs reported that these requests were the first of their kind and subsequently instituted procedural changes to facilitate data sharing with patients. Furthermore, individual patients expressed significant meaning attributed to having access to and control over their cancer genomes. While this experiment exposed multiple difficulties for patient genomic data access, we argue that these difficulties can be overcome with a patient-centered platform to facilitate these efforts. Toward that end, we propose and describe a patient-driven cancer genome collective to directly address this need and empower data liberation and donation to advance cancer research and patient empowerment.
From the principles of genomic data sharing to the practices of data access committees
