During the September 2024 Consent Management Workgroup Meeting, a pivotal discussion emerged regarding the retention of consent information and the implications of opting out of data sharing. The conversation highlighted the necessity of maintaining identifying information to ensure clarity in consent management.
A key point raised was the need for a historical ledger to track individuals' consent statuses, particularly when they opt out. One participant emphasized, "Once you've opted out, you've opted out. There's never gonna be any information exchange ever." This statement underscores the importance of having a record of when individuals opted out, allowing for future re-engagement if they choose to opt back in.
Concerns were also voiced about how long this information would be retained. Questions arose about whether individuals would need to re-opt out after a certain period, such as every 7 to 10 years, or if their opt-out status would be kept indefinitely. The consensus leaned towards retaining this information indefinitely to ensure that consent history is clear and accessible.
The meeting also clarified that consent would be obtained by social workers, ensuring that the process is handled by trained professionals. This approach aims to enhance trust and transparency in how consent is managed within the system.
Overall, the discussions at the meeting reflect a commitment to responsible data management while balancing individual privacy rights with the need for historical consent records. As the workgroup moves forward, the decisions made will likely shape the framework for consent management in Colorado's health data landscape.