Examining the Needs of Patient Stakeholders as Research Partners in Health Data Networks for Translational Research.

Patient stakeholders are getting increasingly involved in research health data networks, particularly as research partners. However, tools do not exist to help effectively orient, educate, and engage patient stakeholders as they take on these roles. Using a human centered design approach, we conducted a patient stakeholder needs assessment qualitative study to identify key user needs to drive design recommendations for development of an online education and engagement tool for research health data networks.

Applying a Participatory Design Approach to Define Objectives and Properties of a "Data Profiling" Tool for Electronic Health Data.

We applied a participatory design approach to define the objectives, characteristics, and features of a "data profiling" tool for primary care Electronic Health Data (EHD). Through three participatory design workshops, we collected input from potential tool users who had experience working with EHD. We present 15 recommended features and characteristics for the data profiling tool.