A new paper published in the journal Medical Care describes the novel systematic approach used by Duke researchers and their partners at nearby institutions to developing a meaningful patient-centered and patient-engaged research program. Duke's Rowena Dolor, MD, MHS, is one of the paper's authors.
The focus of the paper is how the team used "multilevel stakeholder engagement" in the development the Mid-South Clinical Data Research Network, which supports medical research. Their goal was to build a network that was genuinely centered on the needs of patients, and on their health outcomes, which meant that input from patients, clinicians, and researchers was crucial at every phase.
"Engaging stakeholders is expected to generate research that is more relevant, increasing public trust and confidence in research while enhancing public participation in research—a central challenge facing clinical research enterprises," the paper says.
They describe four key ways of involving stakeholders in the network:
- as integral research team members
- on oversight or advisory committees
- as consultants
- through interviews and surveys
In just 18 months, they engaged nearly 6,000 stakeholders in the development of Mid-South, which led to stakeholder-informed policies, processes, and governance.
The Mid-South CDRN is part of PCORnet - click here to learn more.