A Multilevel Approach to Stakeholder Engagement in the Formulation of a Clinical Data Research Network.

Journal Article (Journal Article)

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.

Full Text

Duke Authors

Cited Authors

  • Boyer, AP; Fair, AM; Joosten, YA; Dolor, RJ; Williams, NA; Sherden, L; Stallings, S; Smoot, DT; Wilkins, CH

Published Date

  • October 2018

Published In

Volume / Issue

  • 56 Suppl 10 Suppl 1 /

Start / End Page

  • S22 - S26

PubMed ID

  • 30074947

Pubmed Central ID

  • PMC6136953

Electronic International Standard Serial Number (EISSN)

  • 1537-1948

Digital Object Identifier (DOI)

  • 10.1097/MLR.0000000000000778


  • eng

Conference Location

  • United States