Perceived Utility of Genomic Sequencing: Qualitative Analysis and Synthesis of a Conceptual Model to Inform Patient-Centered Instrument Development.

Background And Objectives: Successful clinical integration of genomic sequencing (GS) requires evidence of its utility. While GS potentially has benefits (utilities) or harms (disutilities) across multiple domains of life for both patients and their families, there is as yet no empirically informed conceptual model of these effects. Our objective was to develop an empirically informed conceptual model of perceived utility of GS that captures utilities and disutilities for patients and their families across diverse backgrounds.

Network Engagement in Action: Stakeholder Engagement Activities to Enhance Patient-centeredness of Research.

Background: Stakeholders (ie, patients, policymakers, clinicians, advocacy groups, health system leaders, payers, and others) offer critical input at various stages in the research continuum, and their contributions are increasingly recognized as an important component of effective translational research. Natural experiments, in particular, may benefit from stakeholder feedback in addressing real-world issues and providing insight into future policy decisions, though best practices for the engagement of stakeholders in observational studies are limited in the literature.

Methods: The Natural Experiments for Translation in Diabetes 2.

A Tale of 2 Constituencies: Exploring Patient and Clinician Perspectives in the Age of Big Data.

Background: Patient and clinician stakeholders are inadequately engaged in key aspects of research, particularly regarding use of Big Data to study and improve patient-centered outcomes. Little is known about the attitudes, interests, and concerns of stakeholders regarding such data.

Research Design: The New York City Clinical Data Research Network (NYC-CDRN), a collaboration of research, clinical, and community leaders built a deidentified dataset containing electronic health records from millions of New Yorkers.

Accelerators: Sparking Innovation and Transdisciplinary Team Science in Disparities Research.

Development and implementation of effective, sustainable, and scalable interventions that advance equity could be propelled by innovative and inclusive partnerships. Readied catalytic frameworks that foster communication, collaboration, a shared vision, and transformative translational research across scientific and non-scientific divides are needed to foster rapid generation of novel solutions to address and ultimately eliminate disparities. To achieve this, we transformed and expanded a community-academic board into a translational science board with members from public, academic and private sectors.

Community capacity building: a collaborative approach to designing a training and education model.

Background: Successful community-academic research partnerships require building the capacity of both community-based organizations (CBOs) and academics to conduct collaborative research of mutual interest and benefit. Yet, information about the needs and goals of research-interested CBOs is lacking. Our partnership aimed to conduct a community research needs assessment and to use results to develop future capacity-building programs for CBOs.