Evaluation of patient engagement (PE) using PCORI Engagement Rubric

Tomasz Grybek & Małgorzata Z. Wisniewska (University of Gdańsk, Poland)

Panel: Biosocialities, patient organizations, and activism in the area of rare diseases

Abstract: The European Reference Networks (ERNs), launched in 2017, are virtual networks of expertise centers of healthcare providers across Europe, dedicated to collaboration and sharing expertise on rare diseases (Smith et al. 2020). ERNs have created a new space for healthcare professionals (HCPs) and patients to cooperate with a common vision and shared goal (Le Cam & Bolz-Johnson, 2019). The aim is to present an evaluation of organizational solutions of PE at one of ERN’s network.
The research was conducted in a patient organization (PO), member of ERN ITHACA’s Patient Council. To evaluate PE the PCORI Engagement Rubric (PCORI, 2016) framework was used.
The strongest fundaments of PE are identified within the Principle A and D as the structural and organizational solutions are in place it the ERN governance structure. Identified area for improvement refers mainly to Principle B and partly C, as the network as itself do not assume any kind of training neither related to the medical expertise nor to the co-working methods and skills.
Discussion & Limitations
Healthcare systems nowadays face the momentum of PE in their activities, however, still more effort is required to both engage patients and to evaluate this engagement (Abbasgholizadeh Rahimi et. al., 2019). Authors are aware of the limitations of the research, because studies have only been carried out in one PO and over the 18-month period of the pandemic. Further research is needed to evaluate other PO representatives as well as to include HCPs perspectives in the evaluation.