Huvudbild för Vitalis 2026
Profilbild för Furthering the Role of Patient and Family Advisory Councils in Person-Centred Healthcare Organizations, Institutions and Research Programs [PCC069]

Furthering the Role of Patient and Family Advisory Councils in Person-Centred Healthcare Organizations, Institutions and Research Programs [PCC069] Har passerat

Onsdag 6 maj 2026 11:15 - 11:30 G4

Moderatorer: Cristin Lind, Jana Bergholtz
Rapportör: Ingrid Nielssen

Spår: Orals Patient & Public Involvement

Patient and Family Advisory Councils (PFACs) are increasingly being recognized and valued as an effective way to integrate patient and family perspectives and priorities into health research, clinical practice, and decision-making within healthcare organizations and institutions, thereby advancing person-centred care.  Integrating lived experience expertise enhances the quality of research evidence by grounding priority setting, conduct, dissemination, implementation, and evaluation in what matters most to patients and families. This helps ensure that healthcare policies and practice remain responsive to diverse patient and family needs, ultimately supporting better informed and shared decision making at all levels – individual, family, organizational and more broadly. This oral presentation will share examples of two PFACs – one informing a European pediatric healthcare institution and a second informing a Canadian program of research.  We will briefly outline their background and purpose and describe membership, work to date and aspirations for going forward, illustrating how PFACS can inform research agendas and program development, fostering collaborative approaches to improving care.   We will highlight five evidence-based key considerations and best practices for PFACs including: 1) designing membership to reflect multiplicity of backgrounds; 2) using inclusive and sustainable engagement approaches; 3) co-determining meeting schedules, timelines, formats and terms of references; 4) establishing equitable approaches to compensation; and 5) identifying and supporting additional engagement opportunities including co-authorship and evaluation of the patient and family engagement. PFACs are no longer a nascent practice but recognized as an effective way to centre patient priority and experience in the co-production of the health research evidence that can inform more person-centred health care policy and practice.  It is therefore important that spaces are made for open discourse and conversation to continue advancing evolving theories and practice of PFACs. In addition to the presentation, we are hoping for an opportunity to have some time for Q&A and exchange.

Språk

English

Konferens

GCPCC

GCPCC Seminarietyp

Orals

GCPCC Kod

PCC069

Föreläsare

Profilbild för Cristin Lind

Cristin Lind Moderator

Executive Director
EUPATI Sweden

www.eupati.se

Profilbild för Jana Bergholtz

Jana Bergholtz Moderator

Patient Partner / Researcher
GPCC, University of Gothenburg

I'm a patient partner (living with cavernoma) with research background (PhD in Earth & Planetary Sciences). At GPCC/University of Gothenburg, my research focus is on patient and public involvement (PPI), with interest in: 1) How to reduce tokenism in PPI?, 2) Representativeness, 3) Pre-conditions and support infrastructures for PPI. You can find me on LinkedIn here: https://www.linkedin.com/in/jana-bergholtz-74298310b/

Ingrid Nielssen Rapportör

Ingrid Nielssen, Lina Aerts, Sandra Munro, Paul Fairie, Maria J Santana