Rare disease suffer from poorly organized or unfunded networks of researchers and clinicians. Define cross-platform minimal datasets for EMRs using collaborative grants for researchers and EMR companies
What is necessary for Electronic Medical Records / Electronic Health Records (EMR/EHR) to be used more to increase acceptance of clinical practice guidelines?
The critical challenge is to develop a standards-based BMT electronic medical record (EMR) and integrate research capacity into the architecture of EMR systems. The ultimate goal would be to build de-identified complete data-sets which can be used to support observational studies and clinical trials, improve transplant outcomes and inform public policy.
How can guideline recommendations be implemented into community practice in a way that is feasible, usable, relevant, and cost-effective? (examples are use of care management, translation of chronic care model, and EMR based tools)