Abstract

(1) Primary Purpose

A SPAN deliverable was the research user interface, or query builder. This research user interface provides a single point of contact between the Coordinating Center that facilitates secure querying and response and the SPAN sites. The Governance Core developed SPAN: Research User Interface Principles and Requirements for two purposes: 1) to describe the technical aspects and requirements of the research user interface as it developed and expanded; and 2) to articulate the principles, roles and responsibilities of individuals and organizations involved in the development, implementation, and augmentation of this scalable distributed research network (DRN) project.

(2) Addressing a common challenge

When building and implementing a new technology that will be employed in a multi-institutional DRN, it is critical to clearly articulate all aspects of that technology and the planned implementation architecture. Building upon the work of previous DRNs, SPAN’s query builder enabled creation and distribution of standardized queries for execution against sites’ individual level data, returning aggregated, summary results using a privately hosted web portal. As responsible stewards of members’ data, local sites need to know how their members’ data will be requested, accessed, transferred, compiled, and returned to the requestor. Proactively explaining each step creates trust and transparency among all collaborators.

(3) Results/Impact

By providing information about each query module and including diagrams of data flow and data types (individual level, summary, etc.) exchanged in the SPAN Network, the SPAN: Research User Interface Principles and Requirements resource enabled site investigators to both understand and describe the SPAN research user interface to individuals at their local institutions. Use of this resource assisted in executing data use and business associate agreements. It was revised iteratively throughout the project period to accurately reflect revisions in, and improvements to, system architecture.

Publication Date

2013

Type of Governance Resource

Process Guidance

Healthcare Setting(s) in which Data were Collected

Community health center(s), Emergency department(s), Inpatient facility(ies), Primary care or ambulatory clinic(s), Specialty clinic(s)

Data Types

Electronic Health/Medical Records (EHR or EMR), Diagnostic data, Pharmacy databases, Claims, Patient Registries, Patient-Reported Outcomes

Generalizability to Other Settings

A number of distributed research networks exist nationally, and others are planned (e.g., the Clinical Data Research Networks proposed by PCORI). Many of these networks include some capacity for remote data querying. The SPAN: Research User Interface Principles and Requirements document can be used as a template for principles and requirements for other networks and/or could be adapted for use by any network that utilizes a research user interface as a means of conducting queries across the network.

Network Description

The SPAN network is comprised of 11 sites covering over 7,000,000 lives. Participating sites include Kaiser Permanente Colorado (lead site), Denver Health and Hospital Authority, Essentia Institute of Rural Health, Geisinger Health System, Group Health Research Institute, Harvard Pilgrim Health Care, HealthPartners, Kaiser Permanente Georgia, Kaiser Permanente Hawaii, Kaiser Permanente Northern California, and Kaiser Permanente Northwest. These sites are geographically distributed throughout the US as they are located in California, Colorado, Hawaii, Georgia, Massachusetts, Pennsylvania, Oregon, Washington, and Minnesota; and cover both rural and urban populations. The SPAN network is based upon the PopMedNet informatics platform, an open source platform used in several other distributed health data networks.

Acknowledgement of Funders

This project was supported by grant number R01HS019912 from the Agency for Healthcare Research and Quality. We are indebted to Matthew F. Daley, MD, Principal Investigator, for his leadership on this project and for his contributions to this abstract. In addition, we would like to thank Lisa Pieper, MSHA, MBA, Project Manager, for her contributions to document revisions and to this abstract.