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Evaluating the Process of Patient Engagement: Insights from a Mixed-Methods Evaluation of a Cancer Center Patient
Lauren Kearney1,2,3, Tracy Battaglia4, Karina Verma1,2
1Boston University Chobanian & Avedisian School of Medicine, Boston, Massachusetts, USA.
Background:
Patient engagement is associated with improved care quality, better health outcomes, increased trust and satisfaction, and reduced costs. Patient engagement is recommended in cancer care. Patient advisory groups (PAGs) are a commonly used approach for engaging patients. However, more evidence is needed to understand how effectively PAGs support meaningful engagement, what factors shape that engagement, and how their contributions align with program goals. This study used a mixed-methods approach to evaluate patient engagement within a PAG supporting an oncology quality improvement initiative.
Methods:
The Oncology Equity Alliance (OEA), a quality improvement initiative to improve care coordination and reduce time to treatment, established a PAG to engage patients throughout the initiative. We conducted a mixed-method evaluation of PAG engagement. Focus groups with PAG members and qualitative interviews with OEA team members were rapidly analyzed to identify engagement successes and challenges, and to determine engagement principles to focus on for survey evaluation. Perceptions of PAG engagement were assessed via surveys of PAG members and OEA team members, using selected items from the Research Engagement Survey Tool (REST). Surveys were analyzed descriptively and according to the REST scoring scheme.
Results:
Focus groups (n = 2) and interviews (n = 3) identified key facilitators that supported engagement including deliberate coordination, mutual respect, a sense of belonging, and co-learning. Engagement was also positively impacted by members' motivations for joining the PAG and practical and logistical considerations. Challenges included PAG members' desire for greater understanding of the project's impact, more agenda setting, and ongoing education about OEA core components. This qualitative data informed the selection of engagement principles of focus for quantitative evaluation using REST. A total of 80% of PAG members (n = 10) felt very engaged, with the degree of engagement corresponding to cooperation and collaboration domains; however, for individual survey items, an average of 20% of responses were marked by PAG members as "not applicable."
Conclusion:
This mixed-method evaluation found strong alignment between program goals and PAG member engagement, highlighted effective strategies, and identified addressable challenges. As patient engagement becomes more common in cancer care, applying these lessons is essential to advancing meaningful, person-centered programs.
Patient Contribution:
This paper presents an evaluation of a PAG. In addition to being the study participants, the members of the patient advisory group participated in member checking to validate the study findings, ensuring that the interpretations reflected their experiences and perspectives.
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