Improving goal-concordant care via a uniquely collaborative and multi-site PFAC model.

Abstract

265 Background: Studies reveal a mismatch between the goals of care (GOC) of cancer patients and actual care received. The 10 members of the Alliance of Dedicated Cancer Centers (ADCC) convened the Improving Goal Concordant Care (IGCC) initiative to address system gaps. IGCC was led by palliative care and oncology experts, with guidance from patient and family advisors. Uniquely, the advisors were identified from patient family advisory councils (PFAC) at each center, forming a collaborative Advisory Group (AG) with the lived experience of each center and the knowledge of advocating for the patient/family voice locally. Methods: PFAC members were recruited from each site to serve on the AG. The 19 member AG met quarterly, with minutes shared with the IGCC oversight group, the Implementation Workgroup (IWG). In September 2023, all AG members were surveyed about perceptions of PFAC engagement and local impact of IGCC. In May 2024, 20 IWG members were surveyed about implementation successes and barriers, including items related to PFAC engagement. Results: AG evaluation and recommendations altered IGCC planned core implementation and evaluation actions meaningfully; for example in 1) selection of structured fields in electronic health record (EHR) and universally accessible GOC documentation and in 2) centering patients in the GOC measure set, including incorporating “Heard & Understood” survey into IGCC evaluation. Other AG guidance around direct patient engagement readiness for GOC conversations and implementing patient GOC surveys was left to individual sites to consider with variable adoption. AG Survey: 63% response rate. 80% noted that the GOC program was discussed with their local PFAC and 92% experienced changed routine patient care after GOC implementation. IWG Survey: 100% response rate. 68% agreed that their center sought guidance from their PFAC during GOC implementation and that leadership presented to their PFAC about their GOC implementation. 26% indicated reporting data to their PFAC; of those that did, 80% agreed that this positively impacted their GOC implementation. Conclusions: While PFACs are occasionally included in quality interventions, this model centered the patient/family voice by supporting a PFAC stakeholder feedback loop working collaboratively and locally to support implementation and evaluation of IGCC objectives. While not all AG recommendations were formally integrated into IGCC, all were considered and many adopted at individual centers. Despite ongoing IGCC-level involvement, center-specific engagement of PFACs varied. Future efforts can track this during process evaluation as local PFAC engagement was highly valued. Consensus building for national best practice implementation and evaluation by recruiting local experts including PFAC members into national collaborative efforts is a successful model for local change.