Epilepsy patients' research data are typically collected and stored in standalone de-identified database silos, making it impossible to merge or compare data across disparate research studies or give feedback to the patient. A patient-generated clinical research ID (CRID) could be used to merge and share data across different research studies for the same patient without revealing PHI/PII data. CRID enables a secure two-way communication between patients and researchers, and between researchers. It has the potential to eliminate data silos, thereby enhancing the value of these data and reducing duplication of effort. And because the CRID is generated by the patient, they control/grant access to their data and get visibility into the studies they are enrolled in. The CRID idea has been welcomed by patient groups and researchers who I've spoken with, but it requires a central group to make it work. It can be implemented relatively quickly and has the potential to transform research data collection, sharing and value.
Idea No. 95