A Multilevel Approach to Stakeholder Engagement in the Formulation of a Clinical Data Research Network. Issue 10 (October 2018)

• Record Type: Journal Article
• Authors: Boyer, Alaina P.; Fair, Alecia M.; Joosten, Yvonne A.; Dolor, Rowena J.; Williams, Neely A.; Sherden, Lisa; Stallings, Sarah; Smoot, Duane T.; Wilkins, Consuelo H.
• Is Part Of: Medical care. Volume 56:Issue 10(2018)Supplement 1
• Publication Date: 2018-10
• Subjects: stakeholder engagement -- clinical data research network -- patient-centeredness -- community engaged research; Economics, Medical -- Periodicals; Insurance, Health -- Periodicals; Santé, Services de -- Administration -- Périodiques; Soins médicaux -- Périodiques; Medical economics -- Periodicals; Health insurance -- Periodicals; Medical economics -- United States -- Periodicals; Health insurance -- United States -- Periodicals; Comprehensive Health Care -- Periodicals; Personal Health Services -- Periodicals; Gezondheidszorg; Économie de la santé -- Périodiques; Santé, Services de -- Périodiques; Health insurance; Medical economics; United States; Periodicals; 362.10973
• DOI: 10.1097/MLR.0000000000000778
• Languages: English
• ISSNs: 0025-7079

Abstract

Abstract : Objectives: 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. Methods: We engaged stakeholders: (1) as integral research team members; (2) on oversight and advisory committees; (3) as consultants (using Community Engagement Studios); and (4) through interviews and surveys. We recruited stakeholders from community health centers, churches, barbershops, health fairs, a volunteer registry, and a patient portal. We prioritized recruitment from populations often underrepresented in research. Results: During the first 18 months, we engaged 5670 stakeholders in developing the MS-CDRN. These were research team members and on governance committees (N=10), consultants (N=58), survey respondents (N=5543), and interviewees (N=59). Stakeholders identified important barriers and facilitators to engagement, developed stakeholder-informed policies, provided feedback on priority topics and research questions, and developed an intake process for data requests and interventional studies that included reviewing for appropriate patient-centeredness, patient engagement, and dissemination. Discussion: Multilevel stakeholder engagement is a novel systematic approach to developing a meaningful patient-centered and patient-engaged research program. This approach allows ongoing input from highly engaged stakeholders while leveraging focused input from larger, more diverse groups to enhance the patient-centeredness of research and increase relevance to broader audiences.