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Global Expert Consultation on the WHO Framework on Patient And EB121/2007/REC/1 Service Delivery and Safety Department, World Health Organization and The Gordon and Betty Moore Foundation EXECUTIVE BOARD, 121 BOARD, EXECUTIVE Global Expert Consultation on the WHO Framework on Patient and ST SESSION: SUMMARY RECORDS SUMMARY SESSION: Family Engagement 27-28 October 2014 WHO, Geneva Switzerland MEETING REPORT Acknowledgements This report summarizes the proceedings, presentations and discussions related to, or those that took place during the global expert consultation on the WHO Framework on Patient and Family Engagement. The expert consultation was jointly hosted by the WHO Department of Service Delivery and Safety (SDS) and the Gordon and Betty Moore Foundation (GBMF or the Moore Foundation), under the guidance of the WHO Framework on Patient and Family Engagement project Advisory Group, which includes Sir Liam Donaldson (Chair), Susan Baade, Dominick Frosch, Edward Kelley, Vivian Lin, Hernan Montenegro, Margaret Murphy and Nittita Prasopa-Plaizier. The writing team for this report included Nittita Prasopa-Plaizier, Felicity Pocklington, Katherine Hayes, Katthyana Aparicio, Susan Baade and Edward Kelley and it was edited by Laura Pearson. Gabriella Garcia Castillejos and Sorin Banica provided administrative support. Contributions in the form of presentations came from Kristin Carman, Peter Carter, Neelam Dhingra-Kumar, Susan Frampton, Dominick Frosch, Jonas Gonseth, Denice Klavano, Piyawan Limpunyalert, Vivian Lin, Kadar Marikar, Hernan Montenegro, Nittita Prasopa-Plaizier, Sue Sheridan and Shams Syed. The facilitators and rapporteurs of the different working groups were Bruce Agins, Susan Baade, Angela Coulter, Dominick Frosch, Hussain Jafri, Kadar Marikar, Stephanie Newell, Luisa Pettigrew and Sue Sheridan. The contents are based on the detailed transcripts of the Consultation and the existing information produced by WHO as part of the Consultation proceedings. Thus, the contents of this report represent the collective work of the Consultation participants , which included: Hanan Aboumatar, Bruce Agins, Ahmed Alamri, Katthyana Aparicio, JS Arora, Susan Baade, Sorin Banica, Sepideh Bagheri-Nejad, Abhishek Bhartia, Liesbeth Borgermans, June Boulger, Kristin Carman, Peter Carter, Angela Coulter, Neelam Dhingra-Kumar, Sir Liam Donaldson, Susan Frampton, Dominick Frosch, Gabriela Garcia-Castillejos, Jonas Gonseth, Rachel Gooden, Jo Groves, Katherine Hayes, Hussain Jafri, Manvir Jesudasan, Robinah Kaitiritimba, Regina Kamoga, Edward Kelley, Selma Khamassi, Denice Klavano, Zuzana Kusynova, Piyawan Limpunyalert, Vivian Lin, Kadar Marikar, Hernan Montenegro, Stephanie Newell, Sara Perazzi, Maria Perez, Luisa Pettigrew, Felicity Pocklington, Nittita Prasopa- Plaizier, Casey Quinlan, Ronen Rozenblum, Susan Sheridan, Ram Shrestha, Shams Syed, Ken Taneda, Nuria Toro Polanco, Tonny Tumwesigye, Lodewijk van Bladel, Suzanne Wood, Xuchun Ye. WHO/HIS/SDS/2015.12 © World Health Organization 2015. All rights reserved. Page | 1 Contents Acknowledgements ................................................................................................................................................................. 1 Executive Summary ................................................................................................................................................................ 3 Abbreviations ............................................................................................................................................................................ 4 1.0 Welcome and Introduction ................................................................................................................................... 5 1.1 Rationale and purpose ............................................................................................................................................... 5 2.0 Engagement for Health: Defining a Common Vision .................................................................................. 6 2.1 Engagement for patient safety and quality improvement ................................................................... 6 2.2 Engagement for universal health coverage (UHC) and quality of care .......................................... 7 2.3 The Gordon and Betty Moore Foundation’s Patient Care Program and a Roadmap for Patient and Family Engagement in Healthcare: Practice and Research ....................................................... 8 2.4 Patient and family engagement - approaches, challenges and opportunities: findings from the PFPS qualitative research ..................................................................................................................................... 12 2.5 Engagement for people-centred policy: the WPRO Patient-Centred Strategy ......................... 14 2.6 WHO Strategy on People-Centred and Integrated Health Services (PCIHS) ............................. 16 3.0 Working Groups ...................................................................................................................................................... 19 3.1 Working Group 1 - Meaningful and effective engagement: what does it look like? How do we measure it?................................................................................................................................................................... 19 3.2 Working Group 2 – Roles, responsibilities and expectations: patients, families, health-care providers and policy-makers for facilitating patient engagement .............................................................. 22 3.3 Working Group 3 – How to create an enabling environment for patient engagement? ...... 25 4.0 Key Partners in Engagement ............................................................................................................................. 28 4.1 Introduction to the Gordon and Betty Moore Foundation ............................................................... 28 4.2 International Society for Quality in Health Care (ISQua) .................................................................. 28 5.0 Empowering and Building Capacity for Engagement: Approaches and Experiences: ............... 29 5.1 Patients for Patient Safety – a WHO approach for empowering and capacity building ....... 29 5.2 Engagement and empowerment: the Canadian experience ............................................................ 30 5.3 Engagement and empowerment: the Ecuadorian experience ........................................................ 31 5.4 Engagement and empowerment: the Malaysian experience ........................................................... 33 5.5 Engagement and empowerment: the Thai experience ...................................................................... 34 5.6 Empowering and building capacity for health-care providers ....................................................... 37 5.7 Empowering and building capacity for researchers and policy-makers .................................... 39 6.0 Proposal on the WHO Framework on Patient and Family Engagement .......................................... 42 Concluding Discussion ........................................................................................................................................................ 45 Appendices .............................................................................................................................................................................. 47 Page | 2 Executive Summary Engaging and empowering patients, families and the community is a key strategy of the WHO Strategy on People-centred and Integrated Health Services. The World Health Organization (WHO), Service Delivery and Safety Department (SDS), in collaboration with the Gordon and Betty Moore Foundation (GBMF) held the first global experts’ consultation for the development of the WHO Framework on Patient and Family Engagement on 27 - 28 October 2014, at WHO headquarters in Geneva. The Gordon and Betty Moore Foundation’s Patient Care Program aims to eliminate preventable harm and unnecessary health-care costs by meaningfully engaging patients and their families within a supportive, redesigned health-care system. This aligns with WHO’s goal of empowering both patients and health-care providers in the implementation of universal health coverage which is safe, of high quality, and patient- and people-centred. The Consultation discussed current evidence, practices, approaches, potential practical tools and proposed approaches that would inform the development of the WHO Framework on Patient and Family Engagement (PFE). This Framework aims to address the global need to empower and strengthen the capacity of patients and families, as well as health-care providers to collaborate and partner in efforts to improve health-care safety, quality and people-centredness. The Consultation was organized under the guidance of the Advisory Group, chaired by Sir Liam Donaldson, WHO Envoy for Patient Safety. It gathered 18 internal experts from relevant WHO units and departments, as well as 37 external experts from government and non-government sectors from 16 different countries across all six WHO regions, and included patients, health-care providers, policy-makers, academics and representatives from non-governmental organizations. On the first day of proceedings, experts shared their evidence, principles, strategies and activities for engaging patients and families in health care. The SDS Department presented four WHO programmes which incorporate
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