Objectives To identify the unmet information needs of clinical teams delivering care to patients with complex medical, social, and economic needs; and to propose principles for redesigning electronic health records (EHR) to address these needs. Materials and Methods In this observational study, we interviewed and observed care teams in 9 community health centers in Oregon and Washington to understand their use of the EHR when caring for patients with complex medical and socioeconomic needs. Data were analyzed using a comparative approach to identify EHR users’ information needs, which were then used to produce EHR design principles. Results Analyses of > 300 hours of observations and 51 interviews identified 4 major categories of information needs related to: consistency of social determinants of health (SDH) documentation; SDH information prioritization and changes to this prioritization; initiation and follow-up of community resource referrals; and timely communication of SDH information. Within these categories were 10 unmet information needs to be addressed by EHR designers. We propose the following EHR design principles to address these needs: enhance the flexibility of EHR documentation workflows; expand the ability to exchange information within teams and between systems; balance innovation and standardization of health information technology systems; organize and simplify information displays; and prioritize and reduce information. Conclusion Developing EHR tools that are simple, accessible, easy to use, and able to be updated by a range of professionals is critical. The identified information needs and design principles should inform developers and implementers working in community health centers and other settings where complex patients receive care.

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Background Strategies to engage patients to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for or the impacts of meaningful patient engagement. Objective We describe and reflect on our patient stakeholder groups, engagement framework, experiences and lessons learned in engaging patients in research, from generating proposal ideas to disseminating findings. Setting The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network (CDRN) is the nation’s largest clinical data set on the safety net, with outpatient clinical data from 122 health systems (1,109 clinics) in 23 states. Results Patients stakeholders co-developed the ADVANCE engagement framework and its implementation in partnership with network leaders. In Phase I of ADVANCE, patients were involved with designing studies (input on primary outcome measures and methods) and usability testing (of the patient portal). In Phase II, the network is prioritizing research training, dissemination opportunities, an “ambassador” program to pair more experienced patient stakeholders with those less experienced, and evaluation of engagement activities and impacts. Discussion The ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. Our experience and framework can be used by other organizations and research networks to support patient engagement activities.

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