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Boyer AP, Fair AM, Joosten YA, Dolor RJ, Williams NA, Sherden L, Stallings S, Smoot DT, Wilkins CH. A Multilevel Approach to Stakeholder Engagement in the Formulation of a Clinical Data Research Network. Medical care. 2018 Oct;56 Suppl 10 Suppl 1(56 Suppl 10 Suppl 1). S22-S26. NIHMSID: NIHMS884088.
Abstract
To ensure meaningful engagement of stakeholders (patients, clinicians, and communities) in developing the Mid-South Clinical Data Research Network (MS-CDRN), we implemented a comprehensive, multilevel approach: (1) identify barriers to involving stakeholders in governance, network design, and implementation; (2) engage stakeholders in priority setting and research topic generation; (3) develop strategies to fully integrate stakeholders in CDRN governance and oversight; and (4) solicit guidance on patient-centered tools and strategies for recruiting research participants.