DATA ANALYSIS: IMPROVE ACCESS, TOOLS, AND CAPACITY

Only through analysis and use of digital health data will its full potential be realized (IOM, 2012). Improving the analytic tools and capacity necessary for learning were common themes in workshop discussions.

Toolsets. Specifically, the creation of toolsets that would expand access to tools and applications beyond the traditional research community and open opportunities for analysis and learning was cited as a potential approach with some precedence in other areas of science.

Curation. Strategies and methods to curate data sources in an ongoing way were also suggested. The need for better metrics to measure data quality and utility, in context-appropriate ways, was also discussed. Some participants suggested that these metrics could focus on the impact of information collection and input processes on the data; for example, data collection in the course of routine care through an EHR versus as part of a clinical trial.

Data integration. Several participants asserted that putting patients at the center of digital health data also included facilitating the integration of their data across the several facets of health, including with public health information and other sources, some of which may be external to health care. Strategies for data integration, in particular, including public health data, were suggested as a necessary first step toward this goal. A related concept of triangulating several data sources to improve predictive accuracy was also mentioned by several speakers as an important advantage to having large amounts of diverse data.

PUBLIC AND PATIENT ENGAGEMENT: RAMP UP INVOLVEMENT

Many participants stressed that successfully engaging stakeholders is crucial for fully realizing the learning and improvement potential of digital health data. Whether a data donor, collector, or user, a patient, clinician, public health official, or researcher, all stakeholders have unique, and changing, roles to play.

Patient voice. Drawing further from the notion of collecting and including information patients care about, many participants cited the need for a strong strategy for building the capacity for direct patient engagement. Specific approaches included the development and refinement of portals, and the inclusion of patient preferences and other patient-sourced data.

Trust. Building trust among stakeholders was a common denominator in issues identified to take advantage of expanding capacity for continuously learning health care. Several discussants noted that in order to create and nurture this trust, stakeholders must feel that their participation in data



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