Table 2.
Recommendations for consortium data coordination
| Category | Needs | Recommendations |
|---|---|---|
| Planning | clear expectations for internal and external data sharing | 1. Build data sharing expectations into expected scope of work in funding announcements (NIHa) |
| sufficient financial resources and time for data coordination | 2. Budget for data coordination, management, and reporting at individual research sites (NIHa) | |
| integration between DCC and consortium | 3. Establish DCC at start of funding period, if not before (NIHa and DCCa) | |
| Communication | consolidation of communication channels | 4. Consolidate lines of communication from DCC to working groups and assign action items appropriately (DCCa and sitesa) |
| technical specifications for data sharing | 5. Maximize transparency of data coordination expectations and resources (NIHa and DCCa) | |
| efficient use of diverse expertise available within the consortium | 6. Facilitate translation of critical information between stakeholder groups (DCCa) | |
| Informatics | consolidation of informatics platforms for data coordination | 7. Deploy a secure, centralized web resource for data coordination (DCCa) |
| flexibility in response to unforeseen events and changing analysis plans | 8. Build flexibility into central databases and data-management software (DCCa) | |
| correct implementation of site-level security and privacy agreements | 9. Prioritize data privacy and security during platform design (DCCa) | |
| Analytics | high-quality and reliable data from heterogeneous sources | 10. Provide clear and detailed documentation of shared data resources (DCCa and sitesa) |
| integration of research and clinical practice; enhanced protection of data from vulnerable populations | 11. Document approaches to data governance (DCCa and sitesa) |
a
Entities which should be responsible for each recommendation.