Patients as partners in a research advisory council role: describing the APERSU Patient Engagement Network

TL;DR

This paper describes a patient engagement network that helps integrate patient perspectives into healthcare research and improve PROMs use.

Contribution

The APERSU-PEN model offers a novel approach to patient engagement by integrating diverse patient voices across the healthcare system.

Findings

APERSU-PEN successfully supports PROMs use in primary care through patient-friendly materials and community outreach.

Flexible meeting options and cloud-based tools help sustain patient participation despite busy schedules and geographical barriers.

The model demonstrates how dedicated funding and mutual learning can enhance PROMs relevance and impact.

Abstract

Patient and public involvement and engagement (PPIE) is crucial for developing patient-centered healthcare research and improving health outcomes. While patient-reported outcome measures (PROMs) capture patients’ perspectives, meaningfully engaging patients in PROMs initiatives remains a challenge. This short report details the establishment and evolution of the Alberta PROMs and EQ-5D Research and Support Unit Patient Engagement Network (APERSU-PEN), a unique model designed to embed patient expertise and share practices throughout patient communities. Unlike many patient engagement groups focused on specific conditions, APERSU-PEN broadly integrates patient perspectives across the healthcare system. The network intentionally recruited experienced patient partners with advocacy and research backgrounds from targeted health and patient organizations. This approach enabled diverse representation and facilitated broad dissemination of PROMs awareness to various patient communities. This broad integration has most recently supported PROMs use in primary care. Key activities include the co-development of patient-friendly PROMs educational materials and active contributions sharing PROMs stories and experiences at various forums, supporting patient understanding and aiming to improve completion rates. The paper highlights challenges and their solutions, such as the broad scope of APERSU’s work, which was addressed by building this network. A critical success factor has been dedicated funding for the involvement of patients as partners, ensuring sustainable engagement and participation in external events. Flexible meeting options and cloud-based document sharing also accommodate busy schedules and geographical dispersion. APERSU-PEN exemplifies a transformative shift in healthcare culture and practice, where patients are recognized as “true end-users” of PROMs. This environment of mutual learning and respect between patients and researchers enhances the relevance and impact of PROMs. The model offers transferable guidance for other initiatives seeking to integrate PPIE meaningfully, ultimately increasing awareness of PROMs throughout patient communities. Future directions include evaluating member experiences and expanding diversity within the network to further strengthen patient engagement in PROMs and APERSU’s support services.

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