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

• Published in: Medical care Vol. 56 Suppl 10 Suppl 1; p. S22
• Main 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
• Format: Journal Article
• Language: English
• Published: United States 01.10.2018
• Subjects: Community-Institutional Relations; Comparative Effectiveness Research - organization & administration; Humans; Interdisciplinary Studies; Patient Outcome Assessment; Patient Participation - statistics & numerical data; Patient-Centered Care - organization & administration; Research Design; Stakeholder Participation; United States; United States
• ISSN: 1537-1948
• DOI: 10.1097/MLR.0000000000000778

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. 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. 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. 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.