Building Meaningful Patient Engagement in Research: Case Study From ADVANCE Clinical Data Research Network.

Area of Science:

• Health Services Research
• Patient-Centered Outcomes Research
• Community Health

Background:

• Patient engagement strategies are increasingly used in US research and clinical care.
• Best practices and impacts of meaningful patient engagement remain underexplored.

Purpose of the Study:

• To describe the patient stakeholder groups, engagement framework, and lessons learned from engaging patients in research within the ADVANCE network.
• To share experiences from generating research ideas to disseminating findings.

Main Methods:

• The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network, the largest safety net dataset.
• Co-development of the ADVANCE engagement framework by patient stakeholders and network leaders.
• Patient involvement in study design, outcome measures, methods, and usability testing (Phase I); focus on training, dissemination, ambassador program, and evaluation (Phase II).

Main Results:

• The ADVANCE engagement framework successfully involved diverse patients in research design, implementation, and interpretation.
• Patients contributed to study design, outcome measures, methods, and usability testing.
• Future plans include research training, dissemination, an ambassador program, and evaluation of engagement.

Conclusions:

• The ADVANCE patient engagement framework effectively involved diverse patients in comparative effectiveness research.
• This framework and experience can guide other organizations and research networks in implementing patient engagement activities.