Expansion of the DEcIDE DRN Infrastructure to Support Studies of Comparative Effectiveness
Clinical, administrative, and other kinds of health care information from very large populations provide a valuable resource for investigating the potential harms and benefits of treatments in different patient groups and across different settings of care. A distributed network supports AHRQ’s Effective Health Care goals to conduct patient-centered research by providing standardized and re-usable information technology approaches that may speed the initiation and conduct of comparative effectiveness studies through the DEcIDE program. A fully-operational distributed research network (DRN) may also allow for rapid evidence generation on the effects of new treatments and other medical technologies. In addition, a fully operational system may make actionable information available in a more timely way than traditionally occurs in standard research environments. In the first phase of this pilot project, DEcIDE investigators developed the design specifications for a scalable DRN, created a prototype for the network (see http://effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productid=316), performed a study using distributed research principles assessing the comparative effectiveness of second line anti-hypertensive therapy, and created a blueprint for implementing a distributed research network. This next phase of the project builds upon that initial work.
This is the second phase of a project to continue testing and to implement a distributed research network infrastructure that supports patient-centered studies and collaborative research on comparative effectiveness. The objectives of the project are to:
1) Expand the one DRN model that was created in phase 1, including enhancing the security, scientific capacity, governance structure, and functionality of the application and web portal to address questions of comparative effectiveness;
2) Institute a DRN Stakeholder Committee;
3) Develop new research topics nominated from stakeholders for comparative effectiveness using the DRN;
4) Enhance secure access control to the DRN; and
5) Collaborate with the other DEcIDE investigators testing other models to implement DRN’s.
The project will make operational a scalable data network that supports secure analyses of electronic information across multiple organizations. With appropriate IRB protection of human rights and privacy, investigators will build on the prototype developed during the first phase of work to expand the network’s technical capabilities, develop governance policies, create an array of partnerships to stimulate use of the network, and collaborate with AHRQ to disseminate the findings of this work. Activities will include substantially enhancing the functionality of the existing DRN prototype, creating operational network “nodes” that include four or more large health plan sites, investigating the technical requirements needed to perform distributed multi-variate analysis using network resources, developing a governance plan for the use of the network resources, updating a million member DRN research dataset created during phase 1, convening a stakeholder group to advise on the use of network resources, using the recommendations of this group to select a study that uses the expanded dataset, collaborating with 2 of AHRQ’s DEcIDE research consortia to develop research proposals that would take advantage of the future DRN, collaborating with DARTNet (another DEcIDE DRN project), and participating with AHRQ in programs that disseminate the project findings and engage relevant stakeholders.
Six scientific and technical reports are anticipated:
Final Report #1 - Design Specifications for Expanded DRN
Final Report #2 - Comprehensive Research Protocol for Use of the Distributed Hypertension Dataset
Final Report #3 - Research Reports Resulting from the Comprehensive Re