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Engage! : Creating a framework for patient and family engagement for a health care organization Tydd-Whiting, Rhandall 2020-08

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	   ENGAGE! CREATING A FRAMEWORK FOR PATIENT AND FAMILY ENGAGEMENT FOR A HEALTH CARE ORGANIZATION By RHANDALL TYDD-WHITING BScN, Laurentian University, 2009   SCHOLARLY PRACTICE ADVANCEMENT RESEARCH PROJECT SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF   MASTER OF SCIENCE IN NURSING  in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (School of Nursing)  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver)  August 2020 © Rhandall Tydd-Whiting, 2020 	   ii	  Abstract Background: Patient and family member engagement (PFE) is the ‘hands-on’ collaboration between patients, family members and health professionals. Meaningful engagement that incorporates patients’ voices into health care planning and delivery is considered a key strategy for achieving the “Triple Aim” of quality health care: improvement of the patient experience, better health outcomes and lower costs. Providence Health Care (PHC) has made a strong commitment to patient- and family- centred care (PFCC) but has not yet developed a framework to guide PFE. Purpose: The purpose of this Scholarly Practice Advancement Research (SPAR) project was to create a PFE framework for PHC through collaboration with patient-family partners. Methods: A virtual workshop was held with patient-family partners from PHC to inform the creation of a PFE framework. Findings: Workshop participants provided a range of insights regarding existing PFE frameworks that highlighted areas that could be strengthened in order to further support patients and family members during the engagement process. Critiques were synthesized into six themes: purpose of the framework, the engagement spectrum, patient- and family- centred language, visuals, PHC mission, vision and values, and combining frameworks. Outcomes: The integration of best available evidence, clinical expertise, PHC’s mission, vision and values, and patient-family voices resulted in The PHC Person and Family Engagement Framework. My experience of the engagement process provided an opportunity to reflect on PFE in practice, which may provide insight for other novices in clinical leadership.  Key words: Patient and family member engagement, patient- and family- centred care, patient-family partners, engagement framework, organization   	   iii Table of Contents Abstract ............................................................................................................................................ ii Table of Contents ............................................................................................................................ iii List of Tables ................................................................................................................................... v Acknowledgements ......................................................................................................................... vi Chapter 1: Background & Purpose .................................................................................................. 1 Background .................................................................................................................................. 2 Purpose ......................................................................................................................................... 3 Summary ...................................................................................................................................... 3 Chapter 2: A Focused Literature Review ......................................................................................... 5 Definition of Patient and Family Member Engagement .............................................................. 6 Essential Elements of PFE Frameworks ...................................................................................... 7 Appraising the Selected Frameworks ........................................................................................ 10 B.C. Ministry of Health Patient, Family, Caregiver and Public Engagement Framework. ....... 11 B.C. Renal Patient & Family Engagement Framework ............................................................. 12 Ontario’s Patient Engagement Framework ................................................................................ 14 Summary .................................................................................................................................... 15 Chapter 3: Methods for Adapting a Patient and Family Engagement Framework ........................ 16 Workshop Preparation ............................................................................................................... 16 Workshop Facilitation ................................................................................................................ 18 Synthesis of Workshop and Questionnaire Findings ................................................................. 19 Care Experience Strategic Direction Advisory Commitee Presentation ................................... 19 Summary .................................................................................................................................... 20 Chapter 4: Workshop and Questionnaire Findings ........................................................................ 21 Purpose of the Framework ......................................................................................................... 21 The Spectrum of Engagement .................................................................................................... 22 Patient- and Family- Centred Language .................................................................................... 23 Visuals ........................................................................................................................................ 23 PHC’s mission, vision and values .............................................................................................. 24 Combining Frameworks ............................................................................................................. 24 Summary .................................................................................................................................... 27 Chapter 5: Discussion .................................................................................................................... 28 Overview of the Framework ...................................................................................................... 28 The Framework Goal ................................................................................................................. 29 Enablers of Engagement ............................................................................................................ 30 Guiding Principles of Engagement ............................................................................................ 31 The Engagement Spectrum ........................................................................................................ 33 Personal Reflections ................................................................................................................... 36 Misalignment in Understanding ................................................................................................. 36 Lessons Learned ......................................................................................................................... 38 Limitations ................................................................................................................................. 39 Conclusion ................................................................................................................................. 40 	   iv References ...................................................................................................................................... 42 Appendix A: Glossary of Terms .................................................................................................... 45 Appendix B: Framework Matrices ................................................................................................. 46 Appendix C: Workshop Materials ................................................................................................. 48 Workshop Invitation .................................................................................................................. 48 Workshop Participant Agenda & Zoom Etiquette ..................................................................... 49 Pre-Work Information Booklet for Participants ........................................................................ 51 Zoom Participant Guide ............................................................................................................. 60 Follow-Up Questionnaire for Participants ................................................................................. 62 Appendix D: Summary of Findings ............................................................................................... 65 Appendix E: The Providence Health Care Person and Family Engagement Framework ............. 69                	   v List of Tables  Table 1. Summary of participants’ likes/dislikes of the selected frameworks………………… 26  Appendix B: Framework Matrices Table 2. B.C. MoH Framework Matrix………………………………………………………....46 Table 3. BC Renal Framework Matrix………………………………………………………… 46 Table 4. Health Quality Ontario Framework Matrix…………………………………………... 47                      	   vi Acknowledgements There are many extraordinary people who helped me to complete this degree.  First, I would like to thank my partner, Nathan, for the love and support you have given to me through every step of this process. Your patience allowed me to grow and learn in unexpected ways.  I would like to express my gratitude to my supervisor, Dr. Maura MacPhee.  Your insights helped to shape this project in ways that furthered both my academic and professional growth. I have appreciated your genuine kindness and encouragement throughout this process.  Also, my thanks to my committee member Dr. Martha Mackay, I sincerely appreciate your thoughtful advice and constructive feedback. I hope to continue to find opportunities to learn from you.  I must thank Kate McNamee and Larry Mroz, for their expert knowledge and feedback. Without Kate McNamee’s support there would be no engagement framework! Kate, I have enjoyed collaborating with you.  I am grateful to many wonderful friends who provided encouragement along the way. Thank you for all the listening ears, shoulders to cry-on, happy dances, messages, cups of coffee and glasses (bottles) of wine! I would not have made it through without such an incredible support system.  Finally to my family, Mum, Dad, Riley and Rogan, thank you for cheering me on, listening, reading papers and assisting with new technology! Even from afar you are a source of strength and love that gives me the confidence to succeed. I am grateful for you all. 	   1	  Chapter 1: Background & Purpose Patient- and family-centered care (PFCC) is defined as “an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families” (Ahmann, Abraham & Johnson, 2003 p. i). A patient- and family-centered approach to health care represents a significant, system-wide paradigm shift from paternalistic, disease-centric practices to more holistic care that fosters equitable relationships between patients, family members1 and the health care team (Institute of Medicine, 2013; Olding et al., 2016). In 2001, the Institute of Medicine’s report Crossing the Quality Chasm catalyzed this culture shift by identifying PFCC as one of the six foundational elements of delivering high-quality health care. Despite several decades of support for PFCC, health care organizations struggle to fully embrace this approach because of difficulties engaging patients and family members in meaningful partnerships with health care workers (Carman et al., 2013; Olding et al., 2016). Whereas PFCC is a philosophical approach to health care culture, patient and family member engagement (PFE) represents the pragmatic, ‘hands-on’ collaboration between patients, family members and health care workers (Carman et al., 2013). Through PFE, the opinions, preferences and values of patients and family members help to inform the planning, delivery and evaluation of health care (Abelson, Humphrey, Syrowatka, Bidonde, & Judd, 2018; Frampton et al., 2017). Evidence has consistently shown that including the needs and preferences of patients and family members in health care planning and delivery results in better outcomes, lower costs and a better patient experience, commonly known as the “Triple Aim” of high-quality health care 	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  1 Throughout this paper, family member is defined as any individual(s), related or unrelated, identified by the patient as someone who provides support and with whom they share a significant relationship (Davidson et al., 2017). This definition is widely recognized in PFCC literature.	  	   2 (Abelson et al., 2018; Frampton et al., 2017; Institute of Medicine, 2013). Thus, engaging patients and family members in decision-making is a critical determinant of meeting modern health care demands for better quality at a lower cost.  Although both PFCC and PFE are considered fundamental to improving the overall quality of health care, several challenges continue to frustrate efforts to engage patients and family members in partnership. These challenges include clinicians’ fears of loss of control and demands on their time; lack of organizational support and resources to support PFE; and clinician confusion over what exactly PFCC and PFE are (Abelson et al., 2018; Frampton et al., 2017; Institute of Medicine, 2013). For patients and family members, the challenge of engagement can begin with whether an invitation to participate is even extended. Some studies note that health care organizations tend to favour patients and family members that are considered more ‘desirable’ because they are able to volunteer their time, hold higher levels of post-secondary education and have fewer health barriers for inclusion, such as cognitive impairment or behavioural health issues (Black et al., 2018; Frampton et al., 2017). However, during engagement, patients and family members often face challenges gaining access to the financial and educational support that is needed in order to make impactful contributions (Black et al., 2018; Frampton et al., 2017). Given the challenges noted, patients and families often assume passive versus active roles in organizational activities and research (Carman et al., 2013; Frampton et al., 2017; Institute of Medicine, 2013). Background   Providence Health Care (PHC) has been recognized both nationally and internationally for their commitment to PFCC (Ahmann et al., 2003; Canadian Foundation for Healthcare Improvement, 2020). Clinical leaders at PHC consider the Family Presence policy to be a significant step in changing organizational culture by recognizing the needs and preferences of 	   3 patients and family members. PHC has reinforced their commitment to PFCC by signing the “Better Together Pledge”, an initiative through the Canadian Foundation for Healthcare Improvement (2020) that recognizes patients and family members as allies in creating quality and safety within the health care system. In addition, PHC has included language of the “Triple Aim”, enhancing the patient experience, population health improvement and fiscal sustainability in their current strategic planning (PHC, 2019). Despite these strong indicators of organizational support, PHC has not yet defined or created a framework for PFE. A significant body of literature indicates that organizational guidance for PFE practices would help PHC achieve their strategic plan and meet their commitments to PFCC (Institute of Medicine, 2013).  Purpose  The purpose of this Scholarly Practice Advancement Research (SPAR) project was to actively engage patient and family representatives in the adaptation of a PFE framework that strengthens PFCC and provides a foundation for the creation of PFE guidelines within one health care organization.    Summary  Currently PFE in health care is considered one of the best strategies to improve the quality of care delivered. Evidence indicates that engaging patients and family members improves the patient experience, promotes better overall health and lowers health care costs (Carman et al., 2013; Frampton et al., 2017; Institute of Medicine, 2013). PHC has been a provincial and national leader in supporting patient and family-centered practices; however, the organization has not yet clearly defined or created a framework for PFE. The goal for my SPAR project outputs was to fill this gap in organizational practice. Completion of a literature review 	   4 and evaluation of existing frameworks guided the creation of a practical, usable framework for PFE intended for implementation across PHC.   	   5 Chapter 2: A Focused Literature Review For this SPAR project, I conducted a focused literature search to locate a definition of PFE and potential frameworks. Both peer-reviewed documents and grey literature were used to identify the essential elements of PFE. My preliminary literature search revealed that PFE is widely supported but often confused with PFCC and other synonymous terms for engagement (Abelson et al., 2018; Carman et al., 2013; Frampton et al., 2017). In order to discover a range of PFE literature I searched the following CINAHL and Medline terms: engagement, stakeholder participation*, family involvement*, consumer participation*, patient participation*, activation, patient-centered, family-centered and shared-decision making. Framework and organization were combined with ‘engagement’ terms using the Boolean operator “AND”. I also located reports, position statements and practice recommendations through governments, professional organizations, advocacy groups and institutions that monitor health care quality. To be considered for inclusion in the literature review, all resources were less than 10 years old, written in English, and focused on organization or system-wide PFE initiatives, as opposed to nursing unit-specific initiatives.  Using the elements of PFE identified from the literature review, as well as PHC’s vision, mission and values, I located three PFE frameworks that could be considered suitable for adaptation to this health care organization. The three PFE frameworks in closest alignment with PHC’s vision and mission are the B.C. Ministry of Health (MoH) Patient, Family, Caregiver and Public Engagement Framework, B.C. Renal Patient & Family Engagement Framework, and Ontario’s Patient Engagement Framework (B.C. MoH, 2018; B.C. Renal, 2019; Health Quality Ontario, 2016). The literature review findings helped to inform the comparison between 	   6 advantages and disadvantages of each framework with respect to planned development of an organization-wide PFE framework for PHC.  Definition of Patient and Family Member Engagement  A clear definition of PFE distinguishes the concept from PFCC and provides direction for the development of a practical and usable framework. Carman et al (2013) define PFE as, “patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system – direct-care, organizational design and governance, and policy making – to improve health and health care” (p. 24). This article is widely referenced among engagement literature and frameworks, which makes this definition commonly accepted by experts in PFE (Abelson et al., 2018; Baker, 2014; B.C. MoH, 2018; Frampton et al., 2017; Health Quality Ontario, 2016; Health Research & Educational Trust, 2013). This definition distinguishes PFE as actions taken in practice where patients, family members and health professionals work together to achieve a common goal, as opposed to an overarching approach to health care delivery.  The key feature of PFE is active partnership between patients, family members and health professionals. All definitions of PFE retrieved from the literature describe health professionals working with, rather than doing for patients and family members (Abelson et al., 2018; Baker, 2014; Black et al., 2018; Carman et al., 2013; Frampton et al., 2017; Greene et al., 2015). An active partnership between patients, family members and health professionals results in a bi-directional flow of information and perspectives, as well as shared responsibility for decision-making (Carman et al., 2013; Frampton et al., 2017; Olding et al., 2016). The aspirational aim of PFE is shared decision-making; however, best available evidence, the patient’s biological condition, and the patient or family member’s preferences, values and life circumstances may determine to what extent patients and family members are able to engage (Carman et al., 2013; 	   7 Frampton et al., 2017; Institute of Medicine, 2013). In keeping with the philosophy of PFCC, patients and family members need to be given choice over their involvement in the engagement process (Carman et al., 2013; Institute of Medicine, 2013).  Essential Elements of PFE Frameworks  The purpose of PFE frameworks is to outline the active partnership between participants across the different levels of health care, and to identify supportive strategies and behaviours for the engagement process (Carman et al., 2013; Frampton et al., 2017). The following section describes the essential elements of PFE frameworks that were identified from the literature review. Language used to describe the essential elements of PFE varies across the literature and different frameworks; therefore, a Glossary of Terms was created to help clarify the different terms (See Appendix A).   The Continuum of Engagement. Within PFE frameworks the continuum of engagement outlines the different ways patients, family members and health professionals may participate in active partnerships (B.C. MoH, 2018; Carman et al., 2013; Health Quality Ontario, 2016; International Association for Public Participation, 2014). Generally, at one extreme of the continuum, patients and family members have limited power over decision-making and a less active role in their health care (Carman et al., 2013). Moving along the continuum, patients and family members take on more active roles across the health care system, such that responsibilities and power over decision-making are shared with health professionals (Carman et al., 2013). Although shared decision-making is usually considered the pinnacle of PFE, one way of engagement is not necessarily considered better than other ways of engaging (Baker, 2014; Carman et al., 2013; Institute of Medicine, 2013). Instead, the level of activity chosen from the continuum should reflect the purpose of engagement and the patients’ and family members’ capabilities, interests or goals (Carman et al., 2013; Institute of Medicine, 2013). 	   8 Originally developed for civic engagement, The International Association for Public Participation (IAP2) Spectrum (2014), has been utilized in PFE frameworks by health care organizations as a continuum of engagement (Baker, 2014; B.C. MoH, 2018; BC Renal, 2019). The IAP2 Spectrum begins with ‘Inform’, in which the goal is to provide information to the public that enhances understanding of the problem, and finishes with ‘Empower’, in which final decision-making is placed in the hands of the public. Although the IAP2 Spectrum depicts ways of engaging with the public, these methods may not be suitable for PFE. Not all aspects of the IAP2 Spectrum, like ‘Inform’, support the active partnership between patients, family members and health professionals, which is the key feature of PFE. Furthermore, ‘Empower’ on the IAP2 Spectrum does not take into account complexities, like patient condition, financial constraints and practice standards that may limit patients’ and family members’ power over the final decision.  Levels of Engagement. Another essential element of PFE frameworks are the levels of engagement, which describe the domain of health care where active partnership occurs (Carman et al., 2013; Health Quality Ontario, 2016). The goal of PFE is to improve both health and health care; therefore, engagement is not limited to direct patient care (Baker, 2014; Carman et al., 2013; Frampton et al., 2017; Institute of Medicine, 2013). Engagement can occur at any level of health care including direct-care, nursing units, organization governance or policy making and community programs (B.C. MoH, 2018; Carman et al., 2013; Health Quality Ontario, 2016; Institute of Medicine, 2013). In fact, leveraging patient and family members’ experience can help to improve design and delivery of health care organizations and systems (Baker, 2014; Institute of Medicine, 2013).  Many PFE frameworks identify three levels of engagement in health care: an individual or direct-care level, an intermediate level and a macro level (B.C. MoH, 2018; Carman et al., 2013; Health Quality Ontario, 2016). Differentiating between the levels of engagement helps to identify the priorities for engaging as well as appropriate methods for 	   9 involving patients and family members (Carman et al., 2013; Health Quality Ontario, 2016; Institute of Medicine, 2013). Factors Influencing Engagement. Across the PFE literature a multitude of factors were identified that influence to what extent patients, family members and health professionals are able to engage. For patients and family members knowledge of their health condition, level of health literacy and beliefs about their role are just a few of the factors that can influence their capacity for engagement (Carman et al., 2013; Frampton et al., 2017; Institute of Medicine, 2013). Only two articles discussed the impact of the social determinants of health on PFE, indicating that patients at a lower income level or who lack proficiency in English may be less likely to be invited to participate in engagement (Black et al., 2018; Carman et al., 2013). A few articles highlighted health professionals’ knowledge, attitude and beliefs surrounding engagement, which can also influence whether opportunities for PFE are created (Baker, 2014; Frampton et al., 2017; Institute of Medicine, 2013). In all of the literature retrieved there was agreement that organizational foundations have the most significant impact on the extent to which PFE can occur (Baker, 2014; Carman et al., 2013; Frampton et al., 2017; Institute of Medicine, 2013). Supportive organizational foundations include policies that encourage PFE, leadership practices that align with PFCC and a philosophical conviction that patient and family member participation is “the right thing to do” (Frampton et al., 2017). All frameworks identify supportive behaviours or strategies to guide engagement, thus mitigating barriers to PFE (B.C. MoH, 2018; Carman et al., 2013; CIHR, 2014; Frampton et al., 2017; Health Quality Ontario, 2016). A common element included in PFE frameworks is guiding principles, which are a set of shared values that must be followed in order for meaningful engagement to occur (CIHR, 2014). Some frameworks identify organizational values and behaviours that further support PFE, including leadership practices and educational supports for 	   10 patients and family members (B.C. MoH, 2018; BC Renal, 2019; CIHR, 2014; Health Quality Ontario, 2016). By outlining relevant values and behaviours within PFE frameworks, organizations can both help to create or strengthen a culture that supports meaningful engagement, and provide guidance to individuals on practices that foster patient and family member involvement in care.  Appraising the Selected Frameworks  My criteria for selecting potential PFE frameworks for adaptation to PHC included demonstration of commitment to improving health care planning and delivery, utilization of the essential elements of engagement and alignment with the organization’s mission, vision and values. PHC’s vision, “driven by compassion and social justice, we are at the forefront of exceptional care and innovation”, underpins the organization’s overall strategic direction (PHC, 2019 p.2). Furthermore, according to the Institute of Medicine (2013), PFE is key to developing a continuously learning health system that delivers better care at a lower cost. Accordingly, the selected frameworks, B.C. MoH Patient, Family, Caregiver and Public Engagement Framework, B.C. Renal Patient & Family Engagement Framework, and Ontario’s Patient Engagement Framework, were chosen for their overarching goal to improve health and health care through the involvement of patients and families in the decision-making process (B.C. MoH, 2018; B.C. Renal, 2019; Health Quality Ontario, 2016). Their alignment with PHC’s mission, vision and values is discussed further, below.   The literature findings formed the basis for my appraisal of the selected frameworks. In addition, consideration was given to how PHC’s mission, vision and values were captured in each framework. Three matrices were developed to outline my initial thoughts about each framework’s strengths and weaknesses, and alignment with PHC’s mission, vision and values (See Appendix 	   11 B). The following discussion summarizes the advantages and disadvantages of the selected frameworks and how they articulate PHC’s mission, vision and values.  B.C. Ministry of Health Patient, Family, Caregiver and Public Engagement Framework.  The primary advantage of the B.C. MoH Patient, Family, Caregiver and Public Engagement Framework (2018) is its focus on patients and family members as participants in care. This framework clearly states that engagement is about doing ‘with’ rather than doing ‘for’ patients and family members, which is a key feature of the definition of PFE (Carman et al., 2013; Frampton et al., 2017). The B.C. MoH explicitly states that this framework is aimed at patients, family members and caregivers as well as health care leaders. Also, the framework provides clear guidance for when engagement is an appropriate strategy to guide decision-making and when it is not appropriate, e.g., when a decision must be made urgently. Guidance regarding when to utilize engagement helps to clarify the patients’ and family members’ role in the engagement process. Of note, role clarity has been associated with more positive engagement experiences for patients and family members (Abelson et al., 2018; Black et al., 2018).   Unfortunately, the B.C MoH (2018) framework does not help to address health inequities that can be perpetuated by PFE. Several articles highlight that PFE attracts a certain type of patient or family member who tend to have a higher level of education, availability to dedicate their time to volunteering and are proficient in English (Black et al., 2018; Frampton et al., 2017). Within this framework’s guiding principles of engagement, there is no clear reference to diversity or consideration of the patients’ and family members’ cultural experience. Furthermore, cartoon graphics utilized to depict the continuum of engagement, only have white faces. This lack of attention to inclusivity is a significant disadvantage for making all patients and family members feel like important participants in the engagement process.  	   12  Overall the B.C. MoH Patient, Family, Caregiver and Public Engagement Framework fits PHC’s mission to meet the physical, emotional and social needs of patients by seeking out their perspectives and including them in the decision-making process. Also, the guiding principles of engagement within this framework include respect, dignity and trust-based relationships. This language aligns with the PHC’s values of Respect and Trust, which promote dignity and support for all patients and family members.  B.C. Renal Patient & Family Engagement Framework  The second framework selected is the B.C. Renal Patient & Family Engagement Framework (2019). The B.C. Renal framework has well defined guiding principles that clearly describe how the engagement process will be supported by patient partners, B.C. Renal staff and health professionals. The B.C. Renal guiding principles include both Responsiveness and Support. Responsiveness is described as a commitment to acknowledging and responding to the voices of patients and families with open and honest (or transparent) communication (B.C. Renal, 2019). Transparent communication that opens channels for patients and family members to share their needs and perspectives is an organizational practice that is important for fostering meaningful engagement (Frampton et al., 2017). Without honest responses to patient and family voices, the engagement process can become tokenistic and may not contribute to improving health care (Frampton et al., 2017). Also, the guiding principle of Support describes learning, training and mentorship opportunities as well as financial reimbursement for patients and family members that participate in engagement (B.C. Renal, 2019). The supports outlined in this B.C. Renal guiding principle are unique among the other frameworks. A lack of either financial and educational support has been found to be a significant barrier for PFE (Black et al., 2018; Frampton et al., 2017). Making a strong commitment to financial and educational support for patients and family members helps to address some of the inequities encountered during 	   13 engagement with health professionals. Following this guiding principle, the B.C. Renal Framework outlines efforts that can support patients’ and family members’ participation in meaningful engagement.   Despite strong support for patients and family members, the B.C. Renal (2019) framework has significant gaps that may diminish the uptake of PFE in practice. First, the domains of health care where PFE may occur are not explicitly identified; however, examples used within the framework point to PFE being utilized at the level of organizational governance. Defining where PFE takes place is important for setting the priorities and determining appropriate activities of engagement (Carman et al., 2013). Opportunities for PFE may be missed if the domains of engagement are not identified for health professionals seeking guidance surrounding engagement at the direct-care level or within smaller community projects. Furthermore, B.C. Renal does not outline the support available for staff and health professionals, as opposed to patient and family member support, which is clearly described. Like patients and family members, health professionals need education and practice resources that provide them the knowledge and skills to support meaningful engagement (Frampton et al., 2017). Organizations that support PFE practices recognize the interdependence of all participants and have supportive resources available for patients, family members and health professionals (Frampton et al., 2017; Institute of Medicine, 2013).  Principally, the B.C. Renal framework is aligned with PHC’s commitment to improving population health. Stewardship is a PHC value that acknowledges the shared accountability for the well-being of the community. Specific examples of PFE within the B.C. Renal (2019) framework demonstrate the positive impact that patient and family involvement has had on provincial kidney care. Therefore, adopting a PFE framework that supports patient and family 	   14 involvement at the level of organizational governance could help PHC achieve the organizational goal of improving community well-being.  Ontario’s Patient Engagement Framework In contrast to the other PFE frameworks, Ontario’s Patient Engagement Framework includes language that supports active partnership between patients, family members and health professionals across the continuum of engagement activities (Health Quality Ontario, 2016). The B.C. MoH (2018) and B.C. Renal (2019) frameworks utilize the IAP2 Spectrum of civic engagement that begins with ‘Inform’ where information is provided to the public. However, active partnership between patients, family members and health professionals is fundamental to PFE and implies that valuable information, input and perspectives are exchanged between participants (Carman et al., 2013; Frampton et al., 2017). In recognition of this, Ontario’s Patient Engagement Framework has developed a unique continuum of engagement that begins with ‘Share’, as opposed to ‘Inform’, in which information and perspectives are exchanged between patients, family members and health professionals (Health Quality Ontario, 2016). By changing the description of the continuum of engagement in this way, Ontario’s framework supports active partnership in all forms of engagement and pushes health professionals to recognize the value of patients’ and family members’ lived experience.  Although Ontario’s Patient Engagement Framework acknowledges financial and cultural inequities in PFE, no specific resources or guiding principles are identified to support broader engagement. Financial and cultural inequities are significant barriers to PFE and can impact which voices are heard and valued in the health care system (Black et al., 2018; Frampton et al., 2017; Institute of Medicine, 2013). Legislation and provincial practice recommendations can help to promote the necessary shift in organizational structure to address these inequities (Frampton et 	   15 al., 2017; Institute of Medicine, 2013). A strong recommendation for financial support in a well-developed provincial PFE framework could help shift traditional practices surrounding PFE.  Several aspects of Ontario’s Patient Engagement Framework align with PHC’s mission and values. First, this framework states the importance of engaging with social groups that have been disadvantaged by the health system (Health Quality Ontario, 2016). This strong statement for social justice in health care speaks to PHC’s mission and vision, which both recognize the importance of compassion and social justice to providing innovative and high quality care (PHC, 2019). Furthermore, the guiding principles and supportive strategies for engagement included in Ontario’s framework coincide with almost all of PHC’s values including Trust, Integrity, Excellence, Stewardship and Respect. Overall, the language used throughout this PFE framework was most closely aligned to PHC’s mission, vision and values for social justice, continuous learning and compassionate care.   Summary  In summary, through this focused literature review a commonly used definition of PFE was located and the essential elements of PFE frameworks were identified. The essential elements of PFE frameworks include a continuum of engagement activities, different levels at which engagement can occur, and guiding principles or supportive strategies that underpin meaningful engagement. These elements, along with PHC’s mission, vision and values, helped to inform my selection of three frameworks that may be suitable for adaptation to the organization. Overall, the findings from the literature provide a succinct outline of the elements for inclusion in a PFE framework for PHC. Further steps taken to adapt the selected frameworks for PHC are discussed in the following chapters.   	   16 Chapter 3: Methods for Adapting a Patient and Family Engagement Framework The work of adapting a practical and usable PFE framework for PHC primarily focused on collaboration with patient-family partners who have previously participated in engagement strategies and who are members of the Care Experience Strategic Direction Advisory Committee (CESDAC) – a hybrid patient-family advisory committee and leadership group. Working closely with the PFCC Practice Consultant for PHC, I was able to gain valuable insight into the needs of PHC, and liaise with patient-family partners and the CESDAC. In addition, I shared my work with a provincial expert in patient engagement and knowledge translation to gain insight into their experiences with engagement practices. The collaboratively agreed-upon PFE framework will serve as a foundation for ongoing co-development of PFE organizational guidelines by patient-family partners and PHC leadership. To deliver a practical and usable PFE Framework for PHC, I carried out the following: 1. Developed a virtual workshop and questionnaire for patient-family partners to share their opinions on PFE frameworks 2. Facilitated the virtual workshop to gather the opinions of patient-family partners about PFE frameworks 3. Synthesized findings from the workshop and questionnaire responses to draft a PFE Framework for PHC 4. Presented a draft of The PHC Person and Family Engagement Framework to the CESDAC for further feedback Workshop Preparation  Engagement frameworks provide guidance for the practical application of PFCC, which values patient and family input at all levels of the planning and delivery of health care. Therefore, 	   17 a PFE framework for PHC would not be practical or usable without the input of patient-family partners guiding its development. The preparation and facilitation of a workshop for patient and family partners at PHC was critical to the development of a practical and usable engagement framework. Working with PHC’s PFCC Practice Consultant, I planned for and conducted a two- and a half-hour workshop to gain patient-family partners’ insights on the selected PFE frameworks that could be adapted for PHC.   An invitation to the workshop was sent to patient-family partners at PHC through the PFCC Practice Consultant (See Appendix C for Workshop Materials). The PFCC Practice Consultant is in contact with patient-family partners across PHC’s programs including the Heart Centre, mental health programs, long-term care facilities and other in-patient and out-patient programs, so the invitation was able to reach a diverse group of potential participants. The maximum number of workshop participants was limited to 15 because of the virtual delivery over Zoom. Due to the perceived complexities of engagement and the selected frameworks, the decision was made to invite patient-family partners who had either previously or were currently participating in a PHC initiative. I believed that the experiences of patient-family partners familiar with engagement would bring valuable insight to how a framework might be shaped to align with PHC’s values and what might need to improve in order to support meaningful engagement.  Although a novice to workshop facilitation, I quickly learned that preparation and planning are key to a successful workshop. I utilized several online resources and met with a provincial research leader in patient engagement from the B.C. Patient Support Unit to help plan my workshop agenda and activities (Appendix C). My discussions with the researcher leader helped to refine my agenda to think critically about the input I was seeking, and to consider how I would elicit these insights from the workshop participants. Through the University of British 	   18 Columbia’s Centre for Instructional Support I met with an Education Technology Assistant who provided valuable insight on how to utilize Zoom for the delivery of a workshop. On the day of the workshop, two technology support persons were in attendance to assist with any major technical issues. To further prepare the participants for the workshop discussions, I created and sent out pre-workshop materials including an information booklet, Zoom instruction guide and agenda (Appendix C). The information booklet provided key information about the concept of patient engagement and helped to familiarize participants with the selected frameworks. Each of the selected frameworks was summarized on one page that included a link to the full framework document. The pre-workshop materials were emailed to each participant the week before the workshop with an invitation to submit any questions or requests for clarification prior to the workshop.  Recognizing the limitations of a virtual workshop, I developed a questionnaire that mirrored the workshop activities (Appendix C). The purpose of the questionnaire was to allow participants to supplement the workshop discussion with their own insights. Zoom can be a difficult platform through which to facilitate large group discussion. The questionnaire provided an opportunity for participants to add to their critiques of the existing frameworks and to identify language that was meaningful to them for supporting PFCC and engagement. The questionnaire and a feedback survey were emailed to participants after the workshop. Completion of the questionnaire and survey was voluntary.  Workshop Facilitation The goal of the workshop was to elicit opinions about the selected PFE frameworks from patient-partners to identify a framework or a combination of framework qualities that could be adapted into a practical, usable framework for PHC. The workshop involved short presentations 	   19 on the common elements of engagement frameworks and the importance of guiding principles. Working in three breakout rooms, small groups discussed the perceived strengths and weaknesses of one of the selected frameworks. Large group discussion helped to build consensus around qualities to include within a PFE frameworks and areas that could be improved. As the workshop progressed, discussion within the large group focused on identifying guiding principles that were deemed supportive of meaningful engagement with patients and family members. The findings from the workshop and follow-up questionnaire are presented in Chapter Four.  Synthesis of Workshop and Questionnaire Findings The findings from the workshop and questionnaire were synthesized to develop a PFE framework for PHC. Qualitative notes from the workshop and questionnaire responses were organized into a table to visualize the most common areas of agreement among participants.  Care Experience Strategic Direction Advisory Commitee Presentation  The final stage of developing PHC’s framework was a presentation over Zoom of a draft of The PHC Person and Family Engagement Framework to the CESDAC. The CESDAC committee is comprised of eight patient-family partners and eight clinical practice leaders. One patient-family partner who participated in the workshop is a member of the CESDAC. The purpose of my presentation was to seek feedback to further refine the adapted framework for PHC. After the presentation, feedback was immediately solicited through a large group discussion over Zoom. To encourage thoughtful critique of the framework, members of CESDAC were invited to contribute their feedback via email for up to 10 days after the presentation. Of note, none of the clinical practice leaders on the CESDAC provided feedback. Responses were received from patient-family partners, which helped to further refine the final recommendation 	   20 for a PFE framework for PHC. The final framework is presented in Appendix E and each section of the framework is discussed in Chapter Five.  Summary  Utilizing the methods described in this chapter, I was able to adapt a combination of features from the B.C. MoH (2018), B.C. Renal (2019) and Health Quality Ontario (2016) PFE frameworks into a practical and usable PFE Framework for PHC. The following chapters discuss in depth the major findings from the patient-family partner responses and how those responses shaped the final framework.   	   21 Chapter 4: Workshop and Questionnaire Findings Given that PFE seeks to incorporate patient and family perspectives into the planning and delivery of health care, the development of a practical and usable PFE framework would not be valid without the input of patient and family members. Thus, the most significant component of developing a PFE framework for PHC was the patient-family partner workshop and questionnaire. The synthesis of patient-family partners’ perspectives from the workshop and questionnaire was carried out through critical reading of notes and questionnaires, and organization of feedback into tables and brief qualitative summaries (See Appendix D: Summary of Findings). From this synthesis, six key themes from the patient-family partner perspectives were identified. The key themes are: purpose of the framework; the spectrum of engagement; patient- and family- centred language; visuals; PHC’s mission, vision and values; and combining frameworks. These themes shaped the development of the PFE framework for PHC and are discussed in detail in this chapter.  Purpose of the Framework  The most common question during the workshop was “What is the purpose of this framework?” Several participants asked this question and expressed confusion surrounding why PHC needs a specific engagement framework. I explained how a PFE framework could strengthen PHC’s support for PFCC and better patient experiences. Some participants, however, were not convinced that a framework would alter current practices (i.e., the status quo). One participant stated, “If this [framework] is to uphold the status quo [of PFE] then this [initiative] is not really patient-family centred!” Confusion among the participants about the purpose of a PFE framework highlights gaps that may exist between organization practices and patient-family engagement experiences.  	   22 The Spectrum of Engagement  Both the workshop discussion and questionnaire responses were critical of the spectrum of engagement used in the B.C. MoH (2018) and B.C. Renal (2019) frameworks. Within the B.C. MoH framework, a few participants liked how the spectrum of engagement “mirrored a patient’s journey, as they gain more control and independence over their care.” The majority of the workshop participants and questionnaire respondents, however, did not like the step-wise representation of different ways of engaging. Participants recognized from their own experience with engagement that several different methods of engagement may be used simultaneously, “Aren’t you using ‘Inform’ and ‘Consult’ when you ‘Involve’ patients and family? I think that could be clearer.” According to the participants, a step-wise representation implies that a single method of engaging is associated with specific types of patient-provider experiences. However, this approach did not correspond with their experiences. Participants were concerned that a step-wise or linear representation of engagement would be misleading to patients and family members.  Participants had issues with the language of the engagement spectrum utilized by the B.C. MoH (2018) and B.C. Renal (2019) frameworks. Both of these frameworks use adaptations of the IAP2 Spectrum (2014), which includes inform, consult, involve, collaborate and empower as the methods of engagement. The IAP2 Spectrum is meant for civic engagement but has been adapted by several Canadian health care systems and organizations to guide PFE. The workshop participants and questionnaire respondents did not feel that the language of the IAP2 Spectrum captures PFCC, especially the use of the term ‘inform’, which implies a one-way direction of giving information, generally from health professionals to patients or family. Several participants argued that ‘empower’ should not be a method of engagement, but rather needs to underlie all engagement activities, “It needs to be clear that it’s [PFE] a collaboration and the patient will 	   23 be consulted and listened to along the way.” There was consensus from the workshop participants and questionnaire respondents that patients and family members must have equal voice in discussions and decisions related to them, and that their input must be recognized and respected as having equal weight to health professionals’ input.  Patient- and Family- Centred Language  While literature does not clearly identify specific patient- and family- centred language, the workshop and questionnaire participants were quick to identify phrasing in the selected frameworks that they did not consider to be patient-family focused. As outlined in the previous theme, participants did not think that the IAP2 Spectrum (2014), which is intended for civic engagement, captured the inclusion of patients and family that is supported by PFCC and PFE. Use of words like ‘inform’, ‘consult’ and ‘we will’, sounded like “power over” to them rather than “power with”, “You need to start with empowerment and work from there since the framework [language] doesn’t make patients feel equal and doesn’t value transparency.” Some terms associated with examples of engagement, such as ‘deliberative polling’, were described as abstract, intangible and irrelevant to them.  Visuals  Several comments from the questionnaire and during the workshop focused on visuals of the selected frameworks. The most significant critique about Ontario’s Patient Engagement Framework (Health Quality Ontario, 2016) was that the white writing on a coloured background was not easy for participants to read, especially if they had a visual deficit. There was also agreement that the B.C. Renal (2019) framework was not visually appealing because of the large amount of small print. The visuals for the B.C. MoH (2018) framework were considered to be clear, colourful and easy to understand. Several participants, however, noted that the examples in 	   24 the B.C. MoH framework focused only on direct-care delivery and all the people in the graphics had white faces. Overall, the participants liked the info-graphic format of the B.C. MoH framework, although they noted that a trade-off of info-graphics is lack of examples of types of engagement.  PHC’s mission, vision and values  One of the objectives of the workshop was to have participants identify how the PHC mission, vision and values could be incorporated into a PFE framework. There was not time during the workshop to meet this objective, and the questionnaire responses only confirmed that the framework should support the mission, vision and values of PHC, as well as the organization’s commitment to PFCC. Some questionnaire respondents suggested incorporating PHC values into a guiding principles section for the adapted framework. The PHC values that were recognized by participants as supportive of meaningful engagement were Excellence, Respect and Trust. These values were seen as enabling engagement by creating a culture of continuous learning and inquiry, respecting the experiences of all those participating in the engagement process, and building relationships that value honesty. These PHC values were also ranked most highly in the section of the questionnaire that asked respondents to identify the guiding principles of engagement that were important to them. Combining Frameworks  The primary purpose of the workshop and questionnaire was to determine from the participants’ perspectives if there was one clear framework that could be adapted for PHC. The workshop discussion and questionnaire responses strongly indicated that no single framework met the requirements for a PHC framework. Instead, participants identified a combination of qualities from each framework that could be adapted into a practical, usable framework for PHC.  	   25 During the workshop and through the questionnaire, participants were asked to identify their major likes and dislikes for each of the selected PFE frameworks. Critiques covered a range of qualities from each framework including visual format, examples of engagement, methods included within the spectrum of engagement, and choice of language. The following table summarizes the participants’ chief likes and dislikes regarding each of the selected PFE frameworks. Table 1. Summary of participants’ likes/dislikes of the selected frameworks Framework Likes Dislikes B.C. MoH Patient, Family, Caregiver and Public Engagement Framework (2018) • Visual presentation of engagement spectrum: all one info-graphic, colourful, black print • Clear that engagement is “nothing about me without me” • Info-graphic doesn’t capture engagement at the community or system level. • Info-graphic implies a hierarchy of engagement methods • Graphics are all white faces BC Renal Patient & Family Engagement Framework (2019) • Used specific examples of engagement activities • Clear explanations of each method of engagement • More targeted to community/organization than to direct care • Some examples were abstract/irrelevant • Language like “we will” and “Inform” implies “power over” Ontario’s Patient Engagement Framework (2016) • Clear sections that describe overall approach to engagement; especially Guiding Principles and Enabled By sections • “Share” as a method of engagement, gives the impression health professionals are listening to patient/family input • Not visually appealing • Difficult to read white print on coloured squares • Could have better examples of engagement for each method on the engagement spectrum  According to the participants, the strongest quality of the B.C. MoH (2018) framework was the simple, colourful visual layout. Most participants agreed that the use of colour to 	   26 highlight different areas within the framework helped to clarify the domains and methods of engagement (See Appendix A for a Glossary of Terms). The use of graphics was perceived to make the framework more appealing to participants by reducing the use of abstract language, and depicting patients and family members as central to engagement. Several participants agreed that the graphic layout of the B.C. MoH (2018) framework methods of engagement was easiest to visualize and to relate to their own experiences. Despite the positive responses to the visual format, the majority of participants did not think this framework captured all opportunities for PFE because the examples of engagement were all from direct-care delivery.   Of the three frameworks, B.C. Renal (2019) received the strongest criticism because of its implied “power over” language. Similar to the B.C. MoH (2018) framework, participants did not agree with the use of ‘Inform’ and ‘Consult’ on the spectrum of engagement because these words were not felt to align with the active partnership that underpins engagement activities. Unlike the B.C. MoH framework, the B.C. Renal framework has specific examples of engagement activities and this was determined by participants to be the best quality of this framework.   Ontario’s Patient Engagement Framework (Health Quality Ontario, 2016) received the most positive comments regarding patient- and family- centred content. Participants preferred the use of ‘Share’ within the spectrum of engagement because this language was perceived to describe a more active exchange of information between all those involved. Participants preferred the inclusion of Guiding Principles and Enablers of Engagement as distinctive sections within this framework. These two aspects of this framework were thought to be helpful for patients, family members and health professionals; to raise awareness of the ways to support collaborative engagement in different contexts. A few participants criticized the use of ‘buzzy words’ that lacked clear examples or definitions. For example, there were no specific examples of ‘Share’ as a method of engagement, although most participants assumed that ‘Share’ meant an exchange of 	   27 information between patients, family members and health professionals. These opinions support participants’ emphasis on incorporating concrete examples of engagement within a framework.  The majority of participants did not like the Health Quality Ontario’s (2016) framework use of graphics or the format. Several participants agreed that of all the frameworks, Health Quality Ontario’s framework was the most difficult to read due to the use of white print. Even though participants liked the content within the Health Quality Ontario framework there was not sufficient agreement that this framework alone should be adapted for PHC. Summary The findings from the workshop and follow-up questionnaire discussed in this chapter have informed the creation of a practical and usable framework for PHC, based on the strengths of three separate frameworks. The following chapter will discuss how these findings informed the final framework for PHC and discuss lessons learned from this project about creating meaningful engagement with patient-family partners.   	   28 Chapter 5: Discussion The purpose of this chapter is to discuss the final construction of a practical and usable PFE Framework for PHC as well as my personal reflections of the overall engagement experience. While empirical knowledge regarding PFE derived from traditional research methods continues to grow, there is much that can be learned from the experience of engaging (Frampton et al., 2017). The findings from my focused literature review, my personal critique of the selected frameworks and expert knowledge of engagement from health care leaders provided some insight into the strengths and weaknesses of the selected frameworks. However, it was the input from patient-family partners through the workshop discussion and questionnaire responses that were most significant to the adaptation of the final recommended framework for PHC.  Through my experience of engaging with patient-family partners I have used their insights in the development a PFE framework. I also gained experiential knowledge of engagement that may be useful for furthering practice that supports novice clinical leaders looking to meaningfully engage with patients and family members.  Overview of the Framework  The PHC Person and Family Engagement Framework (Appendix E) is two pages long and reflects foundational elements of engagement from PFE literature, insights gained from consultation with health care leaders in PFE and the perspectives of patient-family partners. Along with information from these knowledge sources, language that is reflective of PHC’s mission, vision and values was incorporated into the framework to help highlight and strengthen the organization’s commitment to meaningful engagement. The patients’ and family members’ critiques of phrases and language used in the selected frameworks highlighted how traditional power dynamics between health professionals and patients and family can be reinforced through 	   29 choices of wording that have not been thoughtfully vetted by patients and family members.  Language in a practical and usable PFE framework must acknowledge the patient-family partners as a central audience of the framework (Frampton et al., 2017). Language choices need to reflect the active partnership between patients, family and health professionals, both in the methods of engaging and sustaining engagement throughout the health care experience.  The framework is separated into four sections: The Framework Goal, Enablers of Engagement, Guiding Principles of Engagement, and The Engagement Spectrum. These sections capture the fundamental elements of engagement outlined in the literature, including contextual factors influencing engagement, the domains of engagement and continuum of engagement. Each section of the framework is discussed in detail, including specific features believed to promote its utilization and practical application.  The Framework Goal  The most significant feedback from the patient-family partner workshop participants was to question the purpose of a PFE framework for PHC. Some of the framework’s impact will be determined by its socialization and implementation, which is beyond the scope of this project. However, a goal can help to clarify the purpose of a PFE framework and guide users towards upholding a culture of PFCC (Health Quality Ontario, 2016). All the PFE frameworks found in the literature review had a goal or guiding purpose that set out to strengthen patient and family involvement within the system or organization in order to improve outcomes (B.C. MoH, 2018; B.C. Renal, 2019; CIHR, 2014; Health Quality Ontario, 2016).   The goal of the framework was adapted from PHC’s strategic direction regarding PFCC. After consulting with the PFCC Practice Consultant for PHC, the decision was made that the framework goal needed to align with PHC’s strategic direction in order to promote uptake and implementation. The language from PHC’s strategic direction focuses on improving the patient 	   30 and family experience, enhancing the quality of health care delivery and increasing patient and family capacity to manage their health. Simultaneously, PHC’s strategic direction appears to align with the “Triple Aim” of health care improvement, better health outcomes, lower costs and a better patient experience, which PFE helps to achieve (Institute of Medicine, 2013). Thus, sharing language from PHC’s strategic direction with the framework goal further supports the organization’s commitment to PFCC and achievement of the “Triple Aim” of high-quality health care delivery.  Enablers of Engagement  An organization’s support for engagement is considered the most significant factor that influences to what extent patients, family and health professionals are able to engage (Carman et al., 2013; Frampton et al., 2017). Although literature identifies the importance of organizational support, there are few recommendations about how to foster this type of support for engagement (Carman et al., 2013). Two of the three frameworks identified system-wide supports for engagement, but only Ontario’s Patient Engagement Framework embedded “Enablers of Engagement” into their framework summary (Health Quality Ontario, 2016). Patient-family partners that participated in the workshop and those who submitted questionnaire responses identified “Enablers of Engagement” as a feature they liked within Health Quality Ontario’s (2016) framework because this section clearly identifies what must be in place to support meaningful engagement with patients and family.   Ontario’s Patient Engagement Framework defines enablers of engagement as foundational values and ethics, infrastructure and resource support, and knowledge and understanding that support environments capable of meaningful patient engagement activities (Health Quality Ontario, 2016). PHC’s mission, vision and values provide foundational values and ethos of the organization’s culture. Therefore, to create an Enablers of Engagement section 	   31 for this framework, I drew from PHC’s existing mission, vision and values that already provide support for systems-wide engagement. The Enablers of Engagement section for PHC reminds health professionals, patients and family members of the values embedded within the organizational culture that support meaningful engagement and strengthen the framework’s applicability to practice.  Guiding Principles of Engagement  The guiding principles of a PFE framework are a shared set of values that guide the overall approach to engagement and must be followed by all those participating in order to carry out successful engagement activities (CIHR, 2014; Health Quality Ontario, 2016). Like enablers of engagement, guiding principles influence to what extent meaningful engagement can occur, depending on the commitment put forth by participating individuals to uphold the values that are stated. Guiding principles are the values that underpin the engagement process, whereas enablers of engagement are embedded in the organization’s culture and help set the stage for engagement to take place (Frampton et al., 2017; Health Quality Ontario, 2016). To select the guiding principles for the framework, both PHC’s values and the values identified by the three selected PFE frameworks were considered. The guiding principles from the selected frameworks were considered for inclusion, because these values were selected by a broad group of patients, family members, health professionals and researchers, and were often shared between the frameworks, which demonstrated their validity. The workshop and questionnaire participants agreed that guiding principles were important to help direct the way health professionals, patients and family members approach the engagement process.  When the participants were asked to select the guiding principle most important to them, the majority chose Mutual Respect. Mutual respect is in alignment with the selected PFE frameworks, which all include respect for patient experiences and knowledge as a guiding 	   32 principle (B.C. MoH, 2018; B.C. Renal, 2019; CIHR, 2014; Health Quality Ontario, 2016). Looking further, a previous study that explored patient-research partners’ experiences found that the research team atmosphere could range from inclusive to dismissive of patient-research partner input and that mutual respect helps to create positive conditions for meaningful engagement by eliminating behavioural barriers that impede collaboration (Black et al., 2018). This study, along with the workshop participants’ responses, suggests that respect for patients’ and family members’ knowledge varies across health professional teams and significant power imbalances still determine to what extent patients and family members are able to engage. The inclusion of mutual respect as a guiding principle in the PHC framework will support an engagement process that acknowledges the experiences and expertise of all participants and promotes shared power with patients and family members.  Both the workshop participants and the CESDAC patient-family partners discussed sharing power during the engagement process, but with differing perspectives. The workshop participants strongly recommended that all engagement activities should be guided by the principle of empowerment that allows patients and family members to have control over the final decision. Several questionnaire respondents chose empowerment as a guiding principle to underpin the engagement process. In contrast, the CESDAC patient-family partners felt that use of the word empowerment implied that health professionals were gatekeepers of power, which does not acknowledge the autonomy patients and family members have over their health and to what extent they may choose to participate in engagement.  On consultation with leaders in PFE, there was further disagreement about whether empowerment could be supported as a guiding principle or as a method of engagement. Realistically, within the health care system, decisions are not entirely controlled by the patient and family due to an abundance of barriers that may include, but are not limited to, the medical 	   33 options available, adherence to practice standards and financial resources (Institute of Medicine, 2013). One study found that despite reservations surrounding patients’ power over organizational decision-making, having patients engage at this level gives voice and promotes a sense of trust in the governance process (DeCamp et al., 2019).  Taking into account the opinions of the patient-family partners, experts and available evidence, I tried to select a guiding principle that would promote agency for patients and family members, where they are able to share perspectives with impunity and confidently make informed decisions. Trust, a PHC value, is defined by the organization as behaving in ways that promote safety, inclusion and support, aligned with patient and family agency. Trust is associated with transparency and sharing (DeCamp et al., 2019). The other PHC value used in the framework, therefore, is trust, a guiding principle to support the inclusion of patients’ and family members’ perspectives in the engagement process.  The Engagement Spectrum The final section of the framework is an info-graphic that captures the different ways of engaging across three domains within the organization. To develop the info-graphic, I combined essential elements of engagement identified in the literature with the major findings from the workshop participant discussion and their questionnaire responses. The ‘Ways of Engaging’, at the top of the info-graphic, coincides with the continuum of engagement from the literature, which describes the active role that patients and family members have in care decisions and the flow of information between participants during different activities (Carman et al., 2013). As the reader moves to the right across the ‘Ways of Engaging’, power and responsibilities within the engagement process are increasingly shared between patients, family members and health professionals. The ‘Domains of Engagement’ identify where different engagement activities may occur. In the literature the domains of engagement are defined as micro, meso and macro levels (Carman et al., 2013). For this spectrum, the included domains are Direct Care (micro), Program 	   34 Level (meso) and Organization Governance (macro). Further refinement of The Engagement Spectrum was based on the workshop discussion and questionnaire responses.  Overall, The Engagement Spectrum is intended to be patient-family centred and easy to understand so that patients, family members and health professionals can realize the practical application of engagement. The use of black print, colourful shapes and generic icons reflected the workshop participants’ critiques about the ease of readability and lack of diversity in the B.C. MoH (2018) engagement framework. Also, the participants wanted pragmatic patient-family centred examples of engagement as opposed to abstract examples, like deliberative polling, which were used in the B.C. Renal (2019) framework. Clearly, examples of engagement utilized in a PFE framework should reflect pragmatic, concrete ways that patients and family members can participate in the planning and delivery of their health care. Accordingly, within the centre of The Engagement Spectrum are current examples of PFE at PHC. I tried to select routine practices, such as gathering information about how patients are managing their pain or patient-partners participating in organization-wide committees, to demonstrate the accessibility of involving patients and family members in the planning and delivery of care. All of the examples reflect current practices across PHC, with the intent that recognition of real and accessible ways of engaging will inspire all areas of the organization to continue growing the involvement of patients and family members through active partnership.  In addition to the examples of engagement, the ‘Ways of Engaging’ were changed to reflect patient- and family- centred language that was chosen by the workshop participants. Language used on the spectrum of engagement by the B.C. MoH (2018) and B.C. Renal (2019) frameworks was adopted from the IAP2 Spectrum (2014), an organization focused on the broader process of civic engagement. Findings from the workshop participants’ responses demonstrated that the B.C. PFE frameworks did not characterize the active partnership that patients and family 	   35 are expecting to experience during the process of engagement. Workshop participants felt that inclusion of ‘Inform’ and ‘Consult’ as methods of engagement, place the control over the flow of information in the hands of health professionals and minimize the contributions of patient input. Once again, this finding alludes to significant concerns over how patients and family are included in health care decision-making and whether their voices are being respected. Instead of having ‘Inform’ and ‘Consult’ on the ‘Ways of Engaging’, participants chose ‘Share’ and ‘Gather Information’ in order to portray a bi-directional exchange of information and perspectives between health professionals, and patients and family. Moving away from the traditional language used in PFE frameworks may help to represent patients and family as respected and active members in the engagement process. Finally, another important feature of The Engagement Spectrum is in the representation of the ‘Ways of Engaging’. During the workshop discussion, many participants raised issues with a step-wise depiction of the different methods of engaging. The participants recognized that meaningful engagement depends on context as well as patient choice, and that multiple ways of engaging may be used during a project. The insights of participants inspired me to change the graphic used to represent the ‘Ways of Engaging’ so that the methods of engagement are not isolated from one another and no single ‘Way’ is viewed more favourably. To capture the participants’ voices, I developed a graphic of puzzle pieces to depict the ‘Ways of Engaging’ because the pieces are not hierarchical: they can be viewed as distinct activities but are not necessarily carried out in isolation. Ultimately, changing the visual representation of the ‘Ways of Engaging’ is a practical way to convey that any one of the described engagement activities can contribute to improving the patient and family experience.    	   36 Personal Reflections  Several important learning moments occurred during the patient-family partner workshop. The workshop participants and their follow-up questionnaire responses provided invaluable insights that shaped the development of a practical and usable PFE framework for PHC. By involving patient-family partners in the development of the final recommended framework, I was able to gain experience in the process of engagement while researching and writing about the topic. As a novice to clinical leadership, my experience of engaging with patients and family provided many learning opportunities that may be useful to others in a similar position.  Misalignment in Understanding  Approximately one hour into the patient-family partner workshop a participant asked; “What is the purpose of this project?” This question caught me off guard. I was confident that I had stated the purpose of the workshop in the PowerPoint presentation, pre-workshop information materials and my email communications. I tried to reiterate the purpose of the project, which is to develop a PFE framework adapted for PHC that strengthens their culture of PFCC. My explanation was met with further push back when a different participant said; “If this [framework] is to uphold the status quo [of PFE] then this [initiative] is not really patient-family centred!” During the preparation for the workshop, I had assumed that all patients and family members would want a framework that supports their participation in health care planning and delivery. Questions surrounding the purpose of the project and how a framework would impact PFCC at PHC proved challenging for me to answer as a novice to facilitating a project and leading change. The participant concerns over the impact a PFE framework on their experiences with PHC dominated the workshop discussion, making me realize how important it is that concepts expressed in a framework are operationalized in practice and evaluated by patients and families with respect to their health care experiences.  	   37  Reflecting on how I responded to these surprising questions and comments, I considered how my preparation for the workshop affected the development of written information and my confidence as a facilitator. Meaningful PFE that fosters partnership and transparency requires adequate time and resources (Bellows, Kovacs Burns, Jackson, Surgeoner, & Gallivan, 2015). The timing of the CESDAC meeting and my employment schedule limited my time to prepare for the workshop and develop written materials. I used an internet tool to check written materials for their language level and readability but not all of my written materials met plain language standards. Likely with more time to develop written materials, I could have focused on the use of plain language to state the purpose more clearly and avoid some of the confusion among participants. Also, technical difficulties at the beginning of the workshop diminished some of my confidence as a facilitator. With more time to prepare, I could have mitigated technical difficulties by increasing my familiarity with the technology and resources available for support.   Another part of my reflective process was sharing my workshop experience with health care leaders that have expertise in PFE. These leaders reassured me that patient-family partners have questioned the purpose of their projects and that this misalignment in understanding is a common part of the engagement process. Furthermore, studies have found that patient partners approach engagement with a different understanding of their role and expectations from health professionals (Bellows et al., 2015; Black et al., 2018). Knowing that this experience is somewhat common, I have started to question whether there is something missing from how the patient role in the engagement process is described. Even though many engagement frameworks are developed in collaboration with patients and families, literature on PFE and framework development is generally written by and published for an audience of clinical leaders and not readily accessible to public (Frampton et al., 2017). Arguments have been made for moving away from traditional forms of evidence and knowledge transition to promote inclusion of patients and 	   38 family members in developing the field of PFE (Frampton et al., 2017). Changing the methods used to share knowledge and evaluate outcomes so that patients and family are meaningfully included may help to close the gap in expectations between health professionals and the public. While developing the PFE framework for PHC, I did my best to include the patient-family partners insights into all major decisions, so that the final recommendation is practical and usable for patients and family members as well as health professionals.  Lessons Learned  Prior to this project I had never facilitated a workshop, -virtual or otherwise. Through this experience I learned the importance of preparation, being familiar with the technology and utilizing available resources. When all else fails, adaptability is an imperative skill for a facilitator to have. At one point, I was unable to share a website that was critical for small group activity. Utilizing the technology I had and some help from the small group members, I was able to adapt the activity and still gained substantial information from the discussions. In the future, I would ensure I had more alternative strategies planned in case of technical difficulties or unforeseen challenges.  Leading discussion through a virtual workshop was more difficult than I anticipated. During the workshop there were instances where verbal or written comments disrupted the ongoing discussion. Some of the verbal comments were not in a tone that suited a professional environment. In the moment, I struggled to reorient the discussion and set boundaries with disruptive participants. Mutual respect was highly valued by the participants during the workshop discussion and in the responses to the follow-up questionnaire, which fits with findings in the PFE literature (Bellows et al., 2015; Black et al., 2018). I think as a novice facilitator I did not hold everyone accountable for maintaining a respectful workshop environment, even through a 	   39 virtual platform. As I build my clinical leadership skills, I will try to focus on setting and maintaining boundaries that support mutual respect by developing my communication skills.  Limitations  The PHC Person and Family Engagement Framework should be considered a recommendation that may require further refinement before implementation and socialization across the organization. The development of the PHC framework was limited by the virtual delivery of a workshop, a dearth of staff feedback, and the project time constraints. As discussed in my personal reflections, the virtual delivery of a workshop was challenging due to technical difficulties and limitations of interactions. Different circumstances or activities may have changed the outcomes of the workshop discussion. I hope that the follow-up questionnaire allowed participants to share their opinions openly and further contribute their perspectives. Despite the challenges of delivering a virtual workshop, I believe the participants made significant contributions to the development of the recommended framework.  In contrast, the recommended framework does not reflect feedback from various PHC staff. The PFCC Practice Consultant for PHC, was available for consultation and provided helpful feedback throughout the project, however no feedback was received from PHC leaders who are members of the CESDAC. A period of ten days was given to all CESDAC members to submit feedback about the framework. Although patient-family partners provided comments there was no response from the PHC leaders on the committee. The lack of response from PHC leaders could mean they have no issue with the recommended framework or that further refinement will be necessary before it is taken up across the organization.  Finally, the project time constraints prevented further refinement of the recommended framework and the development of PFE guidelines. A SPAR project is intended to be completed in a 12-week semester. The project time limitations definitely impacted the workshop 	   40 preparation, the analysis of workshop findings and consequently the development of the final framework. Despite the time constraints that impacted the project, a PFE framework is a living document that should change as organization culture and patient-family needs evolve (B.C. MoH, 2018). Instead of a completed work, the recommended framework that I have developed should be considered a launch point for strengthening PFE at PHC, and is open for further development as PFCC and support for engagement evolves.  Conclusion  This project not only resulted a PFE framework but also embodied the process of engagement by seeking out patient-family partners’ perspectives to shape the final recommendation. Active partnership with patients and family members is the fundamental element of engagement; therefore, development of a practical and usable framework would not be complete without the involvement of patient-family partners. Furthermore, PHC’s strong commitment to PFCC made the inclusion of patient and family member voices and choices a requirement of the project. Drawing from the patient-family partners’ insights to shape the final framework supports its application across PHC and for a broad audience. More work may need to be done to determine how patients, family members and health professionals will utilize the PHC framework. Providing guidance on how to use the framework to support meaningful engagement is a significant piece that needs to be addressed to improve the patient and family experience.   Ultimately, The PHC Person and Family Engagement Framework represents a synthesis of best available evidence, the expertise of health care leaders specializing in engagement, and the perspectives of patient-family partners. Combining these credible forms of knowledge, I have created a practical and usable engagement framework that is in alignment with PHC’s mission, vision and values. The goal of this framework is to strengthen PHC’s culture of PFE and 	   41 commitment to PFCC. As the PHC framework is taken up, active partnerships with patients and family will help to change the way health care is delivered.   	   42 References  Abelson, J., Humphrey, A., Syrowatka, A., Bidonde, J., & Judd, M. (2018). Evaluating patient, family and public engagement in health services improvement and system redesign Healthcare Quarterly, 21, 61–67. Ahmann, E, Abraham, M.R., Johnson, B. (2003). Changing the concept of families as visitors: supporting family presence and participation. Institute for Patient and Family Centered Care: Maryland, Virginia. Baker, G. R. (2014). Evidence boost  : A review of research highlighting how patient engagement contributes to improved care. Canadian Foundation for Healthcare Improvement: Toronto, Ontario. Retrieved from http://www.cfhi-fcass.ca/sf-docs/default-source/reports/evidenceboost-rossbaker-peimprovedcare-e.pdf?sfvrsn=8 B.C. Renal (2019). B.C. Renal patient and family engagement framework. Retrieved on April 1, 2020 from http://www.bcrenalagency.ca/resource-gallery/Documents/Pt_Enga-Patient_and_Family_Engagement_Framework.pdf Bellows,	  M.,	  Kovacs	  Burns,	  K.,	  Jackson,	  K.,	  Surgeoner,	  B.,	  &	  Gallivan,	  J.	  (2015).	  Meaningful	  and	  effective	  patient	  engagement:	  What	  matters	  most	  to	  stakeholders.	  Patient	  Experience	  Journal,	  2(1),	  18–28.	  https://doi.org/10.35680/2372-­‐0247.1069	  Black,	  A.,	  Strain,	  K.,	  Wallsworth,	  C.,	  Charlton,	  S.	  G.,	  Chang,	  W.,	  McNamee,	  K.,	  &	  Hamilton,	  C.	  (2018).	  What	  constitutes	  meaningful	  engagement	  for	  patients	  and	  families	  as	  partners	  on	  research	  teams?	  Journal	  of	  Health	  Services	  Research	  and	  Policy,	  23(3),	  158–167.	  https://doi.org/10.1177/1355819618762960	  British Columbia Ministry of Health. (2018). Patient, family, caregiver and public engagement framework 2018. Retrieved on April 1, 2020 from 	   43 https://www2.gov.bc.ca/assets/gov/health/about-bc-s-health-care-system/heath-care-partners/patients-as-partners/patients-as-partners-framework.pdf Canadian Foundation for Healthcare Improvement (2020). Better together pledging organizations. Retrieved on April 8, 2020 from  https://www.cfhi-fcass.ca/WhatWeDo/better-together/pledging-organizations Carman, K. L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., & Sweeney, J. (2013). Patient and family engagement: a framework for understanding the elements and developing interventions and policies evidence and potential. Health Affairs, 32(2). https://doi.org/10.1377/hlthaff.2012.1133 CIHR.	  (2014).	  Strategy	  for	  patient-­‐oriented	  research:	  Patient	  engagement	  framework.	  Retrieved	  from	  http://www.himss.org/ResourceLibrary/genResourceDetailPDF.aspx?ItemNumber=28305	  Davidson, J. E., Aslakson, R. A., Long, A. C., Puntillo, K. A., Kross, E. K., Hart, J., … Curtis, J. R. (2017). Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Critical Care Medicine, 45(1), 103–128. https://doi.org/10.1097/CCM.0000000000002169 DeCamp,	  M.,	  Dukhanin,	  V.,	  Hebert,	  L.	  C.,	  Himmelrich,	  S.,	  Feeser,	  S.,	  &	  Berkowitz,	  S.	  A.	  (2019).	  Patients’	  views	  about	  patient	  engagement	  and	  representation	  in	  healthcare	  governance.	  Journal	  of	  Healthcare	  Management,	  64(5),	  332–346.	  https://doi.org/10.1097/JHM-­‐D-­‐18-­‐00152 Frampton, S. B., Guastello, S., Hoy, L., Naylor, M., Sheridan, S., & Johnston-Fleece, M. (2017). Harnessing evidence and experience to change culture: a guiding framework for patient and family engaged care. NAM Perspectives, 7(1). https://doi.org/10.31478/201701f 	   44 Greene, J., Hibbard, J. H., Sacks, R., Overton, V., & Parrotta, C. D. (2015). When patient activation levels change, health outcomes and costs change, too. Health Affairs, 34(3), 431–437. https://doi.org/10.1377/hlthaff.2014.0452 Health Quality Ontario. (2016). Ontario’s patient engagement framework: creating a strong culture of patient engagement to support high quality health care. Retrieved on April 1, 2020 from http://www.hqontario.ca/Portals/0/documents/pe/ontario-patient-engagement-framework-en.pdf Health Research & Educational Trust. (2013). A leadership resource for patient and family engagement strategies. Retrieved from www.hpoe.org International Association for Public Participation. (2014). IAP2 spectrum. Retrieved on April 1, 2020 from https://iap2canada.ca/Resources/Documents/0702-Foundations-Spectrum-MW-rev2%20(1).pdf Institute of Medicine. (2013). Best care at lower Cost: the path to continuously learning health care in America . Washington, DC: National Academies Press. https://doi.org/10.17226/13444 Olding, M., McMillan, S. E., Reeves, S., Schmitt, M. H., Puntillo, K., & Kitto, S. (2016, December 1). Patient and family involvement in adult critical and intensive care settings: a scoping review. Health Expectations. Blackwell Publishing Ltd. https://doi.org/10.1111/hex.12402 Providence Health Care (2019). The Providence plan: achieving our vision. Retrieved April 22, 2020 from http://www.providencehealthcare.org/about-providence/accountability/reports-plans/strategic-plan   	   45 Appendix A: Glossary of Terms Activities of engagement – refers to specific examples of how engagement takes place between patients, family members and health professionals, i.e. patient satisfaction surveys, participation in a quality and safety committee, (Health Quality Ontario, 2016).  Continuum of engagement - outlines the different ways patients, family members and health professionals may participate in active partnerships. Moving along the continuum of engagement, responsibilities and power over decision-making become more shared between patients, family members and health professionals (Carman et al., 2013)  Domains of engagement – describes where engagement can occur in the health care system. Usually in PFE frameworks domains are divided into a micro-, meso- and macro-systems (B.C. Ministry of Health, 2018).  Levels of engagement – describes where engagement can occur in the health care system. (see domains of engagement).  Methods of engagement – refers to more general descriptors of how engagement happens between patients, family members and health professionals. Usually found on the continuum of engagement, i.e. Inform, Share, Consult, Involve, (B.C. MoH, 2018).   Patient and family member engagement - patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system – direct care, organizational design and governance, and policy making – to improve health and health care (Carman et al., 2013, p. 24)  Spectrum of engagement – Used interchangeably with continuum of engagement. This term outlines the different ways patients, family members and health professionals may participate in active partnerships. Moving along the spectrum of engagement, responsibilities and power over decision-making become more shared between patients, family members and health professionals (Health Quality Ontario, 2016).  Ways of engaging – considered a plain language term to describe both general and specific examples of how engagement takes place between patients, family members and health professionals, i.e. a patient satisfaction survey, Involve (Carman et al., 2013).    	   46 Appendix B: Framework Matrices  Table 2. B.C. MoH Framework Matrix Strengths Weaknesses Fit with PHC’s Mission/Vision/Values clear about when not to use engagement defines engagement as exchange between pts, families, HCP but then describes inform as one way communication from HCP focused on promoting continuous learning in health care has domains of engagement depiction of framework largely focuses on direct care. Less focus on higher domains of engagement guiding principles include respect trust specifically mentions engagement is doing "with" rather than doing "for"  size of information  outlines 6 underlying principles to guide engagement  Lacks inclusiveness of cultural competence - white people only in info-graphic on engagement spectrum!  provides some guidance for 'how to' do engagement - champions, context     Table 3. BC Renal Framework Matrix Strengths Weaknesses Fit with PHC’s Mission/Vision/Values guiding principles present includes one way 'inform' on spectrum of engagement guided by similar principles: community stewardship, integrity, respect from a provincial agency doesn't define engagement  promotes continuous learning focuses on operationalizing engagement : The engagement process no domains of engagement focused on organization level   engagement process very focused on pt/fam education not HCP/organization education   length of document   Some difficult language for patients & family   Not very mindful of cultural competence    	   47 Table 4. Health Quality Ontario Framework Matrix Strengths Weaknesses Fit with PHC’s Mission/Vision/Values defines engagement should empower be on the spectrum or a guiding principle? considers social justice/community stewardship framework guided by a goal  doesn't fit PHC domains, more oriented to the provincial system  focuses on interdependence of pts, families and HCP has all the elements of engagement: domains, enablers, spectrum no guidance around process of engagement  focused on continuous learning in health care guiding principles embedded in framework Size of document  doesn't use language of inform - discusses sharing no specific mention of Indigenious culture  considers circumstances/social justice of persons involved   empower is a principle of engagment rather than on the spectrum, this implies every engagement activity can be empowering      	   48 Appendix C: Workshop Materials  Workshop Invitation Hello,	  	  My	  name	  is	  Rhandall	  Tydd-­‐Whiting.	  I’m	  a	  student	  in	  the	  Masters	  of	  Science	  in	  Nursing	  program	  at	  UBC.	  For	  the	  final	  project	  of	  my	  Masters,	  I’m	  working	  with	  Kate	  McNamee	  to	  develop	  a	  Patient	  and	  Family	  Engagement	  Framework	  for	  Providence	  Health	  Care.	  As	  a	  patient-­‐family	  partner,	  your	  experience	  is	  very	  important	  to	  the	  development	  of	  this	  framework.	  	  	  You’re	  invited	  to	  share	  your	  perspectives	  on	  patient	  and	  family	  engagement	  through	  a	  dynamic	  virtual	  workshop.	  The	  workshop	  will	  be	  held	  via	  Zoom	  on	  Monday	  June	  15,	  2020	  from	  1:00-­‐3:30pm.	  Please	  RSVP	  to	  this	  event	  by	  replying	  to	  this	  email.	  Space	  is	  limited	  to	  15	  people	  due	  to	  the	  non-­‐traditional	  workshop	  format.	  	  The	  purpose	  of	  the	  virtual	  workshop	  is	  to	  work	  together	  to:	  • adapt	  an	  existing	  Patient	  and	  Family	  Engagement	  Framework	  for	  Providence	  Health	  Care.	  	  • 	  utilize	  a	  variety	  of	  activities	  to	  discuss	  what	  engagement	  with	  patient	  and	  families	  can	  look	  like	  at	  Providence	  Health	  Care.	  	  	  Materials	  for	  you	  to	  review	  and	  a	  conference	  link	  with	  instructions	  will	  be	  emailed	  to	  you	  by	  Wednesday	  June	  10,	  2020.	  Please	  take	  a	  few	  moments	  to	  review	  these	  materials	  before	  June	  15th,	  as	  they	  will	  be	  the	  focus	  of	  the	  discussions.	  	  	  If	  you	  decide	  to	  participate,	  please	  note	  that	  the	  workshop	  will	  be	  recorded.	  All	  information	  shared	  will	  be	  kept	  confidential.	  Once	  the	  project	  is	  complete,	  the	  workshop	  recording	  will	  be	  destroyed.	  	  	  I	  hope	  to	  connect	  with	  you	  over	  this	  unique	  virtual	  experience.	  Feel	  free	  to	  reply	  to	  Kate	  McNamee	  kmcnamee@providencehealth.bc.ca	  or	  me,	  rtyddwhiting@providencehealth.bc.ca	  if	  you	  have	  questions	  on	  the	  workshop.	  I	  look	  forward	  to	  working	  together	  to	  create	  a	  framework	  that	  can	  be	  used	  to	  support	  Providence	  Health	  Care	  in	  their	  goal	  to	  meaningfully	  engage	  with	  patients	  and	  families.	  	  	  Warm	  Regards,	  Rhandall	  Tydd-­‐Whiting,	  RN	    	   49 Workshop Participant Agenda & Zoom Etiquette Patient	  and	  Family	  Engagement	  Workshop	  Workshop	  Goal	  • To	  adapt	  an	  existing	  Patient	  and	  Family	  Engagement	  Framework	  for	  Providence	  Health	  Care	  (PHC)	  	  Agenda	  Item	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  Virtual	  Tools/Overview	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  TIME	  Introduction	   -­‐Log	  into	  Zoom	  -­‐	  Facilitator	  will	  share	  screen	  for	  activity	  	  15	  Minutes	  Engagement	  Frameworks	   -­‐Shared	  Screen	  -­‐Overview	  of	  selected	  frameworks	  10	  Minutes	  Critiquing	  a	  Framework	   -­‐Using	  Zoom	  “Breakout	  Rooms”	  -­‐Small	  groups	  discuss	  one	  selected	  framework	  20	  Minutes	  Group	  Discussion	   -­‐Returning	  to	  main	  chat	  room	  -­‐Each	  group	  will	  share	  their	  ideas	  	  20	  Minutes	  	  BREAK	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  15	  Minutes	  Guiding	  Principles	  of	  Engagement	  	  -­‐Shared	  Screen	  -­‐Overview	  of	  Guiding	  Principles	  	  10	  Minutes	  Idea	  Challenge	   -­‐Facilitator	  will	  share	  a	  link	  to	  an	  online	  poll	  -­‐	  Poll	  results	  will	  be	  shared	  and	  guide	  discussion	  10	  Minutes	  Group	  Discussion	   -­‐Returning	  to	  main	  chat	  room	  -­‐Facilitator	  will	  share	  poll	  results	  and	  guide	  discussion	  	  30	  Minutes	  	  Wrap-­‐Up	  	  -­‐Review	  of	  decisions	  made	  -­‐Feedback	  	  10	  Minutes	  	  	   50 Important	  Zoom	  Etiquette:	  Here	  are	  a	  few	  simple	  guidelines	  to	  help	  foster	  respectful	  Zoom	  etiquette	  and	  give	  everyone	  a	  chance	  to	  participate:	  	  	  1. Please	  mute	  your	  microphone	  when	  you	  are	  not	  speaking.	  This	  will	  help	  to	  minimize	  disruptions	  or	  distracting	  noises	  during	  discussion.	  	  2. We	  would	  like	  to	  use	  video	  as	  much	  as	  possible	  to	  capture	  non-­‐verbal	  communication.	  When	  using	  video	  please	  be	  mindful	  of	  your	  background	  to	  help	  minimize	  distractions.	  	  	  3. Please	  use	  the	  ‘Raise	  your	  hand’	  button	  under	  the	  Participant	  icon	  if	  you	  have	  a	  question	  or	  are	  waiting	  to	  speak.	  	  	  4. Remember	  that	  in	  most	  cases	  everyone	  can	  read	  your	  chat,	  so	  please	  be	  respectful.	  The	  Host	  will	  monitor	  the	  chat	  and	  try	  to	  help	  everyone	  in	  a	  timely	  manner.	  	  	  5. There	  may	  be	  some	  technical	  challenges!	  Please	  be	  patient	  and	  we’ll	  work	  together	  to	  overcome	  these	  challenges.	  	     	   51 Pre-Work Information Booklet for Participants 	  	  	  	  PATIENT	  AND	  FAMILY	  ENGAGEMENT	  VIRTUAL	  WORKSHOP	  PRE-­‐WORK	  MATERIALS	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	   52 TABLE	  OF	  CONTENTS	  	  Providence	  Health	  Care	  Mission,	  Vision	  and	  Values	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	   	   	  	  	  	  	  	  	  	  	  	  	  3	  	  Summary	  of	  Engagement	  Frameworks	   	   	   	   	   	   	   	  	  	  	  	  	  	  	  	  	  	  4	  	   	   	   	   	   	   	  	  	  	  	  	  	  	  	  	  	  	  Overview	  of	  Engagement	  Frameworks:	  	  B.C.	  Ministry	  of	  Health	  Patient,	  Family,	  Caregiver	  and	  Public	  Engagement	  Framework	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  5	  	  B.C.	  Renal	  Patient	  and	  Family	  Engagement	  Framework	  	  	  	  	  	  	   	   	   	   	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  6	  	  	  	  Ontario’s	  Patient	  Engagement	  Framework	  	  	  	  	  	  	  	  	  	  	  	  	  	   	   	   	   	   	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  7	  	  Guiding	  Principles	  of	  Engagement	  Frameworks	   	   	   	   	   	   	  	  	  	  	  	  	  	  	  	  	  8	  	  References	   	   	   	   	   	   	   	   	   	   	   	  	  	  	  	  	  	  	  	  	  	  9	  	  	  	   	  	   53 Providence	  Health	  Care	  Mission,	  Vision	  and	  Values	  	  The	  mission,	  vision	  and	  values	  of	  Providence	  Health	  Care	  (PHC)	  are	  fundamental	  to	  who	  we	  are	  and	  what	  we	  do.	  The	  purpose	  of	  adapting	  a	  patient	  and	  family	  engagement	  framework	  for	  PHC	  is	  to	  capture	  the	  spirit	  of	  the	  mission,	  vision	  and	  values	  in	  our	  document.	  As	  we	  collaborate	  on	  adapting	  a	  framework	  for	  PHC	  please	  reflect	  on	  the	  following:	  	  	  	  	  	  	  	  	   54 Summary	  of	  Engagement	  Frameworks	  	  PHC	  has	  made	  Person	  and	  Family-­‐	  centred	  Care	  an	  important	  part	  of	  their	  organization’s	  culture	  but	  has	  not	  developed	  a	  framework	  for	  patient	  and	  family2	  engagement.	  It	  is	  important	  to	  recognize	  that	  person	  and	  family-­‐	  centred	  care	  is	  different	  from	  the	  ‘hands-­‐on’	  partnership	  of	  patient	  and	  family	  engagement.	  The	  purpose	  of	  this	  summary	  is	  to	  provide	  a	  definition	  of	  patient	  and	  family	  engagement	  and	  identify	  common	  elements	  of	  engagement	  frameworks.	  	  Carman	  et	  al.	  defines	  patient	  and	  family	  engagement	  as	  “patients,	  families,	  their	  representatives,	  and	  health	  professionals	  working	  in	  active	  partnership	  at	  various	  levels	  across	  the	  health	  care	  system	  –	  direct	  care,	  organizational	  design	  and	  governance,	  and	  policy	  making	  –	  to	  improve	  health	  and	  health	  care”	  (2013	  p.	  224).	  This	  definition	  recognizes	  that	  active	  partnership	  is	  essential	  for	  meaningful	  engagement.	  Studies	  have	  shown	  that	  better	  engagement	  between	  patients,	  families	  and	  health	  professionals	  can	  improve	  health	  outcomes,	  contribute	  to	  improvement	  in	  quality	  and	  safety,	  and	  help	  control	  health	  care	  costs.	  	  	  Elements	  of	  Engagement	  Frameworks	  	  • The	  spectrum	  of	  engagement	  describes	  the	  different	  levels	  of	  engagement	  that	  promote	  and	  support	  active	  partnerships.	  Moving	  along	  the	  spectrum,	  the	  decision-­‐making	  power	  of	  patients	  and	  families	  increases	  until	  responsibility	  is	  shared	  with	  health	  professionals.	  The	  spectrum	  recognizes	  that	  engagement	  is	  not	  “one	  size	  fits	  all”.	  It	  is	  important	  that	  patients	  and	  families	  have	  the	  right	  to	  choose	  their	  level	  of	  participation.	  	  	  • Domains	  of	  engagement	  are	  the	  different	  levels	  of	  health	  care	  where	  engagement	  can	  occur.	  There	  are	  opportunities	  for	  engagement	  between	  patients,	  families	  and	  health	  professionals	  at	  the	  level	  of	  direct	  care,	  unit	  or	  program	  design,	  and	  organization	  policy	  and	  governance.	  	  • Contextual	  factors	  of	  engagement	  refers	  to	  the	  factors	  that	  can	  influence	  engagement.	  Contextual	  factors	  may	  include	  the	  organization’s	  culture,	  support	  from	  leaders,	  cultural	  competence	  and	  finances.	  	  	  As	  you	  review	  the	  selected	  frameworks,	  try	  to	  make	  note	  of	  the	  elements	  of	  engagement	  that	  each	  of	  the	  organizations	  chose	  to	  include.	  If	  you	  want	  to	  read	  the	  full	  documents	  that	  accompany	  the	  selected	  frameworks,	  a	  link	  is	  provided	  at	  the	  end	  of	  each	  summary	  page.	  	  	  	   	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  	  2	  Family	  is	  defined	  as	  any	  individual(s),	  related	  or	  unrelated,	  identified	  by	  the	  patient	  as	  someone	  who	  provides	  support	  and	  with	  whom	  they	  share	  a	  significant	  relationship	  (Davidson	  et	  al.,	  2017).	  	   55 OVERVIEW	  OF	  ENGAGEMENT	  FRAMEWORKS	  	  	  1.	  	  B.C.	  Ministry	  of	  Health	  Patient,	  Family,	  Caregiver	  and	  Public	  Engagement	  Framework	  	  The	  B.C.	  Ministry	  of	  Health’s	  framework	  goal	  is	  to	  improve	  patients’	  care	  experiences,	  improve	  the	  health	  of	  populations	  and	  reduce	  the	  per	  capita	  cost	  of	  health	  care.	  	  	  	  (B.C.	  MoH,	  2018)	  Link	  to	  full	  document:	  https://www2.gov.bc.ca/assets/gov/health/about-­‐bc-­‐s-­‐health-­‐care-­‐system/heath-­‐care-­‐partners/patients-­‐as-­‐partners/patients-­‐as-­‐partners-­‐framework.pdf 	  	  	  	  	  	  	   	  	   56 2.	  	  B.C.	  Renal	  Patient	  and	  Family	  Engagement	  Framework	   The	  B.C.	  Renal	  framework	  goal	  is	  to	  optimize	  patient	  experiences	  and	  outcomes.	  In	  their	  full	  document,	  B.C.	  Renal	  describes	  their	  three	  domains	  of	  engagement	  as	  input	  from	  patients	  and	  families,	  co-­‐design	  with	  patients	  and	  families,	  and	  capacity-­‐building	  with	  patients	  and	  families.	  	  	  	  (BC	  Renal,	  2019)	  	  Link	  to	  full	  document:	  http://www.bcrenalagency.ca/resource-­‐gallery/Documents/Pt_Enga-­‐Patient_and_Family_Engagement_Framework.pdf 	  	  	  	  	  	  	  	   	  	   57 3.	  	  Ontario’s	  Patient	  Engagement	  Framework	  	  Ontario’s	  Patient	  Engagement	  Framework	  was	  created	  by	  Health	  Quality	  Ontario,	  a	  provincial	  government	  agency	  that	  is	  focused	  on	  making	  health	  care	  more	  effective,	  affordable	  and	  efficient.	  In	  one	  page,	  this	  framework	  clearly	  states	  their	  strategic	  goal,	  domains	  of	  engagement,	  enablers	  of	  engagement,	  and	  a	  set	  of	  guiding	  principles.	  	  	  	  	  (Health	  Quality	  Ontario,	  2016)	  	  	  Link	  to	  full	  document:	  https://www.hqontario.ca/Portals/0/documents/pe/ontario-­‐patient-­‐engagement-­‐framework-­‐en.pdf	  	  	  	  	   58 Guiding	  Principles	  of	  Engagement	  	  Guiding	  principles	  of	  engagement	  are	  a	  set	  of	  shared	  values	  that	  must	  be	  followed	  in	  order	  to	  support	  meaningful	  engagement	  among	  patients,	  families	  and	  health	  professionals.	  Here,	  I	  have	  summarized	  guiding	  principles	  that	  are	  shared	  among	  many	  engagement	  frameworks	  (BC	  Renal,	  2019;	  CIHR,	  2014;	  Health	  Quality	  Ontario,	  2016)	  for	  your	  consideration.	  	  Inclusiveness:	  Engagement	  brings	  together	  a	  diversity	  of	  patient	  and	  family	  perspectives,	  and	  outcomes	  are	  reflective	  of	  their	  contributions.	  	  Support:	  Adequate	  support	  and	  flexibility	  are	  provided	  to	  patients	  and	  family	  to	  ensure	  that	  they	  can	  contribute	  fully	  to	  discussion	  and	  decisions.	  This	  includes	  creating	  safe	  environments	  that	  promote	  cultural	  competence,	  training,	  education	  and	  financial	  compensation.	  	  Mutual	  respect:	  Patients,	  families	  and	  health	  professionals	  acknowledge	  and	  value	  each	  other’s	  expertise	  and	  experiences.	  	  Co-­‐Build:	  Patients,	  families	  and	  health	  professionals	  work	  together	  to	  identify	  problems,	  set	  priorities,	  and	  produce	  and	  carry	  out	  solutions.	  	  Partnership:	  Meaningful	  engagement	  requires	  authentic	  and	  mutually	  beneficial	  relationships	  between	  patients,	  families,	  health	  professionals	  and	  the	  organizations	  they	  work	  with.	  	  	  Learning:	  All	  participants	  in	  engagement	  should	  expect	  to	  learn	  –	  about	  each	  other’s	  perspectives,	  about	  the	  issue	  at	  hand,	  and	  about	  how	  things	  may	  improve.	  	  	  Empowerment:	  patients	  and	  families	  need	  to	  feel	  empowered	  to	  openly	  express	  their	  needs,	  perspectives	  and	  concerns	  without	  fear	  of	  reprisal,	  and	  to	  make	  informed	  decisions	  with	  confidence.	  	  Transparency:	  Health	  professionals	  and	  organizations	  are	  honest	  about	  their	  apprehensions,	  resource	  limitations	  and	  knowledge	  gaps	  when	  it	  comes	  to	  engaging	  with	  patients	  and	  family.	  	  Responsiveness:	  Health	  professionals	  and	  organizations	  commit	  to	  acknowledging	  and	  responding	  to	  the	  voices	  of	  patients	  and	  families.	  This	  includes	  being	  clear	  about	  the	  purpose	  of	  engagement	  from	  the	  outset	  and	  embracing	  open	  and	  honest	  communication	  throughout	  the	  entire	  process.	  	  	  	  	  	  	   	  	   59 References	  	  B.C.	  Renal	  (2019).	  B.C.	  Renal	  patient	  and	  family	  engagement	  framework.	  Retrieved	  on	  April	  1,	  2020	  from	  http://www.bcrenalagency.ca/resource-­‐gallery/Documents/Pt_Enga-­‐Patient_and_Family_Engagement_Framework.pdf	  	  British	  Columbia	  Ministry	  of	  Health.	  (2018).	  Patient,	  family,	  caregiver	  and	  public	  engagement	  framework	  2018.	  Retrieved	  on	  April	  1,	  2020	  from	  https://www2.gov.bc.ca/assets/gov/health/about-­‐bc-­‐s-­‐health-­‐care-­‐system/heath-­‐care-­‐partners/patients-­‐as-­‐partners/patients-­‐as-­‐partners-­‐framework.pdf	  	  Canadian	  Institute	  for	  Health	  Research	  (2014).	  Strategy	  for	  patient	  oriented	  research.	  Patient	  engagement	  framework.	  Retrieved	  on	  April	  3,	  2020	  from	  https://cihr-­‐irsc.gc.ca/e/documents/spor_framework-­‐en.pdf	  	  Carman,	  K.	  L.,	  Dardess,	  P.,	  Maurer,	  M.,	  Sofaer,	  S.,	  Adams,	  K.,	  Bechtel,	  C.,	  &	  Sweeney,	  J.	  (2013).	  Patient	  and	  family	  engagement:	  a	  framework	  for	  understanding	  the	  elements	  and	  developing	  interventions	  and	  policies	  evidence	  and	  potential.	  Health	  Affairs,	  32(2).	  https://doi.org/10.1377/hlthaff.2012.1133	  	  Davidson,	  J.	  E.,	  Aslakson,	  R.	  A.,	  Long,	  A.	  C.,	  Puntillo,	  K.	  A.,	  Kross,	  E.	  K.,	  Hart,	  J.,	  …	  Curtis,	  J.	  R.	  (2017).	  Guidelines	  for	  family-­‐centered	  care	  in	  the	  neonatal,	  pediatric,	  and	  adult	  ICU.	  Critical	  Care	  Medicine,	  45(1),	  103–128.	  https://doi.org/10.1097/CCM.0000000000002169	  	  Health	  Quality	  Ontario.	  (2016).	  Ontario’s	  patient	  engagement	  framework:	  creating	  a	  strong	  culture	  of	  patient	  engagement	  to	  support	  high	  quality	  health	  care.	  Retrieved	  on	  April	  1,	  2020	  from	  http://www.hqontario.ca/Portals/0/documents/pe/ontario-­‐patient-­‐engagement-­‐framework-­‐en.pdf	  	  Providence	  Health	  Care	  (2019).	  Mission:	  Forward.	  Providence	  Health	  Care	  Strategic	  Plan.	  Retrieved	  on	  June	  5,	  2020	  from	  https://www.missionforward.ca/wp-­‐content/uploads/2019/09/STRAT-­‐PLAN-­‐book-­‐FULL-­‐s.pdf	    	   60 Zoom Participant Guide 	  How	  to	  Join	  a	  Zoom	  Meeting:	  	  You	  do	  not	  need	  a	  Zoom	  account	  to	  attend	  the	  workshop,	  but	  you	  will	  need	  to	  install	  the	  Zoom	  application	  on	  your	  device.	  You	  can	  do	  this	  ahead	  of	  time	  by	  following	  the	  prompts	  when	  you	  click	  on	  the	  link	  included	  in	  the	  Zoom	  invite.	  Once	  you	  have	  installed	  the	  Zoom	  application:	  • Join	  the	  Workshop	  session	  by	  clicking	  the	  link	  included	  in	  the	  Zoom	  invite	  • Click	  ‘open	  zoom.us	  app’	  on	  the	  Pop-­‐up	  *Tips:	  Close	  all	  background	  programs	  for	  better	  connectivity.	  Join	  the	  Workshop	  a	  few	  minutes	  early	  to	  test	  your	  computer	  audio	  and	  video.	  	  How	  to	  Participate	  During	  the	  Workshop:	  	  A	  tool	  bar	  at	  the	  bottom	  of	  the	  Zoom	  meeting	  screen	  will	  display	  ways	  of	  engaging	  with	  the	  group.	  Use	  the	  picture	  below	  to	  see	  the	  icons	  available	  in	  Zoom:	  1. Share	  audio	  by	  clicking	  the	  Microphone	  icon.	  This	  icon	  will	  mute/unmute	  your	  audio.	  2. Share	  video	  by	  clicking	  the	  Video	  icon.	  This	  icon	  will	  turn	  your	  webcam	  on	  and	  off.	  	  4.	  	  	  Use	  the	  Participants	  icon	  to	  raise	  your	  hand	  or	  ask	  the	  Host	  to	  slow	  down.	  	  6.	  	  	  Chat	  by	  text	  with	  ‘Everyone’	  or	  individual	  participants	  by	  clicking	  the	  Chat	  icon.	  	  	  	  	  	  	  	  	  Feel	  free	  to	  use	  the	  Chat	  icon	  if	  you	  want	  to	  write	  a	  question	  or	  ask	  for	  assistance.	  8.	  	  	  Share	  basic	  reactions	  (like	  giving	  thumbs	  up)	  with	  the	  Reaction	  icon.	  *Tips:	  Try	  to	  find	  a	  quiet,	  well	  lit	  spot	  for	  joining	  the	  session.	  For	  using	  video	  it	  is	  best	  if	  light	  is	  coming	  from	  in	  front	  of	  you	  or	  at	  an	  angle.	  Light	  (like	  a	  window)	  coming	  from	  behind	  will	  shadow	  your	  face.	  If	  you	  experience	  any	  lag	  time	  during	  the	  session	  you	  may	  need	  to	  turn	  your	  video	  off.	  	  	  	  	  	  How	  to	  Participate	  in	  Breakout	  Rooms:	  	  During	  the	  workshop	  the	  Host	  will	  use	  breakout	  rooms	  for	  small	  group	  discussions.	  The	  Host	  will	  invite	  you	  to	  a	  break	  out	  room	  and	  you	  must	  click	  Join.	  Once	  you	  are	  in	  the	  breakout	  room:	  • You	  can	  participate	  using	  the	  same	  icons	  as	  in	  the	  main	  room.	  • If	  you	  need	  assistance	  in	  the	  breakout	  room,	  click	  the	  Ask	  for	  Help	  button	  to	  let	  the	  Host	  know	  	   61 • Once	  the	  Host	  ends	  the	  breakout	  room	  for	  you,	  you	  will	  be	  given	  the	  option	  to	  return	  to	  the	  main	  session	  immediately	  or	  in	  60	  seconds	  so	  that	  you	  can	  wrap	  up	  discussion.	  	  	  How	  to	  Share	  Your	  Screen:	  	  During	  small	  group	  sessions,	  you	  may	  want	  to	  share	  your	  screen	  within	  your	  group.	  To	  share	  your	  screen:	  • Click	  the	  Share	  Screen	  icon	  (icon	  5	  in	  the	  picture	  above).	  	  • Select	  what	  you	  would	  like	  to	  share.	  You	  can	  share	  your	  whole	  desktop	  or	  just	  your	  internet	  screen.	  	  • Click	  Share	  Screen.	  	  • When	  you	  are	  done	  click	  the	  red	  Stop	  Share	  button	  	  	  	  	  Zoom	  Tutorials	  	  If	  you	  would	  like	  more	  instructions	  for	  using	  Zoom	  check	  out	  the	  following	  websites	  and	  YouTube	  videos:	  Providence	  Health	  Care	  Zoom	  Instructions	  for	  Patients	  http://covid19.providencehealthcare.org/medical-­‐staff/resources-­‐medical-­‐staff/virtual-­‐health/how-­‐can-­‐i-­‐use-­‐zoom-­‐virtual-­‐visits	  Zoom	  Tutorials	  https://support.zoom.us/hc/en-­‐us/articles/206618765-­‐Zoom-­‐Video-­‐Tutorials	  Downloading	  Zoom	  &	  Joining	  a	  Meeting	  https://www.youtube.com/watch?v=kh50kVaIdAY	  Meeting	  Controls	  https://www.youtube.com/embed/ygZ96J_z4AY?rel=0&autoplay=1&cc_load_policy=1	    	   62 Follow-Up Questionnaire for Participants Patient	  and	  Family	  Engagement	  Questionnaire	  	  Thank	  you	  for	  taking	  the	  time	  to	  fill	  in	  this	  questionnaire.	  Your	  answers	  will	  be	  combined	  with	  the	  discussions	  from	  the	  Virtual	  Workshop	  to	  inform	  the	  creation	  of	  an	  engagement	  framework	  for	  Providence	  Health	  Care	  (PHC).	  Please	  email	  your	  completed	  questionnaire	  to	  rtyddwhiting@providencehealth.bc.ca	  by	  June	  20,	  2020.	  I	  will	  share	  my	  progress	  on	  the	  engagement	  framework	  with	  participants	  via	  email	  by	  July	  3,	  2020.	  	  	  	  Please	  refer	  to	  the	  Pre-­‐Work	  Materials	  information	  booklet	  to	  complete	  this	  survey.	  	  1.	  For	  each	  framework	  in	  the	  material	  you	  received,	  identify	  three	  things	  you	  liked	  and	  three	  things	  that	  could	  be	  improved.	  	  	  B.	  C.	  Ministry	  of	  Health:	  	  	  	  	  	  	  	  	  	  BC	  Renal:	  	  	  	  	  	  	  	  	  	  	  Health	  Quality	  Ontario:	  	  	  	  	   	  	   63 2.	  Thinking	  about	  the	  things	  you	  liked	  in	  each	  framework,	  what	  qualities	  do	  you	  think	  must	  be	  included	  in	  an	  engagement	  framework	  for	  Providence	  Health	  Care?	  	  	  	  	  3.	  Is	  there	  one	  framework	  that	  stands	  out	  to	  you	  that	  we	  could	  use	  or	  perhaps	  change	  slightly	  to	  use	  at	  Providence	  Health	  Care?	  	  	  	  4.	  Which	  statement	  should	  guide	  our	  PHC	  Patient	  Engagement	  framework?	    a.	  	  A	  goal	  statement:	  The	  goal	  of	  our	  framework	  is	  to	  create	  a	  strong	  culture	  for	  person	  and	  family	  member	  engagement	  at	  PHC	  that	  supports	  our	  commitment	  to	  exceptional	  care	  and	  innovation.  b.	  A	  vision	  statement:	  The	  people	  we	  serve	  and	  their	  families	  are	  active	  partners	  in	  achieving	  PHC's	  vision	  to	  be	  at	  the	  forefront	  of	  exceptional	  care	  and	  innovation.  c.	  Create	  your	  own	  statement:  	  	  	  5.	  The	  levels/components/pillars	  of	  engagement	  describe	  the	  ways	  patients,	  families	  and	  health	  professionals	  can	  engage	  together.	  For	  the	  Providence	  Health	  Care	  framework,	  we	  can	  choose	  the	  words	  we	  like	  best	  to	  describe	  the	  different	  levels/pillars/components.	  	  	  For	  the	  following	  questions,	  highlight	  or	  circle	  your	  response:	  ii)	  What	  word	  would	  you	  choose	  to	  describe	  the	  first	  level	  of	  engagement?	  	  a.	  Share	  	  b.	  Educate	  	  	  iii)	  What	  word	  would	  you	  choose	  to	  describe	  the	  second	  level	  of	  engagement?	  	  a.	  Consult	  	  b.	  Gather	  Information	  	  	  	   64 iv)	  What	  word	  would	  you	  choose	  to	  describe	  the	  highest	  level	  of	  engagement?	  	  a.	  Empower	  	  b.	  Partner	  	  6.	  The	  Guiding	  Principles	  of	  Engagement	  and	  PHC	  Values	  are	  listed	  in	  the	  box	  below.	  Please	  circle	  or	  highlight	  a	  total	  of	  6	  words.	  (You	  may	  want	  to	  refer	  to	  your	  Pre-­‐Work	  Materials	  for	  the	  description	  of	  each	  word).	  	  	  	  Inclusiveness	  	  	  Mutual	  respect	  	  Partnership	  Spirituality	  	  Trust	   Stewardship	  Support	  	  Co-­‐Build	   Learning	  Excellence	  	  Integrity	   Empowerment	  Responsiveness	   Transparency	   Respect	  	  	  6.	  Please	  rank	  your	  6	  choices	  from	  1	  to	  6.	  (1-­‐being	  most	  important	  and	  6-­‐being	  least	  important).	  	  	  1.	  	  2.	  	  3.	  	   	  4.	  	  5.	  	  6.	  	  	  	  Any	  further	  comments:	  	  	  	  Thank	  you	  for	  completing	  this	  questionnaire.	  Please	  email	  your	  responses	  to	  rtyddwhiting@providencehealth.bc.ca	  by	  June	  20,	  2020.	  	   65 Appendix D: Summary of Findings  Critiques of Each Framework  B.C. Ministry of Health  Workshop Findings Likes: Dislikes Lay out Doesn’t capture community or system levels of engagement Language fairly clear Implies a hierarchy of engagement Captures significance of empowerment Too focused on the individual/direct care Increasing levels imply weight – representative of shared decision-making   Questionnaire Findings Likes: Dislikes: Visual presentation – all one graphic, colourful, black print Not clear if all ‘levels’ of engagement apply to every person in every situation Clear examples of each method of engaging If inform is used, need to be clearer that this is not informing people of the a decision made but advising them of options Level and domains of engagement well illustrated PCC doesn’t occur in progressive steps Patient-centred : clear that engagement is “nothing about me, without me”  HCP do not just inform – inform is not strong enough PCC language Visuals help to increase understanding of framework for all that are involved Need better examples of what inform can be Simple language Graphics of people are all white faces Arrow going back and forth implies engagement can move in different directions Missing guiding principles  Only describe individual domain in examples  BC Renal  Workshop Findings Likes: Dislikes: The goal of Empowerment is patient-centered IAP2 spectrum is not really patient/health centered Good example of what not to do Doesn’t relate to people with kidney disease  Not visually appealing (too generic)  Need to start with empowerment and work from there since the framework doesn’t 	   66 make patients feel equal and doesn’t value transparency  Would like to see “Share” at the beginning rather than inform  Very bureaucratic language “we will” that is not patient centered  Questionnaire Findings Likes Dislikes Info on one graphic Written for HCP/BC Renal employees as a opposed to patients as equal partners Better explanation of Inform than BC MOH Missing guiding principles Used specific examples of engagement Seems more targeted to community/organization then direct care Black print Some examples of empowerment were abstract – “what is deliberative polling?” Explanations clear of engagement levels Language is not patient centered – didn’t feel appropriate for patients or geared to promoting transparency Goals and promises made to public  All three domains can use single graphic (implied)   Health Quality Ontario Workshop Findings Likes: Dislikes: Overall content – clear sections Visually poor for patient audience Word choices (share rather than inform) Not enough examples (especially for guiding principles) Especially like the ‘Enabled by’ section  Structured well for different audiences, patients, families or health professionals    Questionnaire Findings Likes Dislikes All info on one page Impossible to read white print on coloured squares – consider people with vision problems Explains approach to engagement indepth but simply Could have better examples under each of the engagement approaches Enabled by section identifies supports for engagement Didn’t like the word Share 4 levels of engagement much more PCC Graphic is not visually appealing – too many words that are not connected together Share gives the impression HCP is Graphic isn’t understandable unless 	   67 listening someone is explaining it to you Liked the goal statement – strong culture of engagement across the different domains “lots of buzz words” without examples – ‘very little trust in something that shows a lot of words but no promises, no actual direction’  Guiding principles clearly identified and how they are applied ‘doubt any one would use this – the approach is hidden in the framework – actual steps to achieve the goal are not emphasized’  Empowerment as a guiding principle as opposed to way of engagement   Guiding Principles  Workshop Findings:  The top rated guiding principles were: (in order) Mutual Respect Inclusiveness Transparency Partnership Empowerment Responsiveness   • Excellence just missed the cut for top spot but an argument was made that Excellence as a guiding principle would drive approach to engagement and push everyone to do better, not stagnant on the ‘status quo’ of engagement • Another point was made that if we have Transparency and Mutual Respect these guiding principles help to build trust  Questionnaire Findings:  The guiding principles chosen by the questionnaire included: Mutual Respect (chosen by everyone/highest rank 3/4 respondents) Trust Transparency  Empowerment Excellence Responsiveness Partnership (chosen but not ranked) Inclusiveness (chosen but not ranked) 	   68 Learning  Support  Stewardship  • 3/4 respondents selected Excellence • Mutual Respect came out as a strong guiding principle  Other Questionnaire Findings:  Qualities to include on a framework: • 5 section approach like Health Quality Ontario Framework • Clear about all patients being partners “nothing about me, without me” • Emphasis on PHC mission, vision and values • Examples to show how PHC will apply the approaches • Patients upfront in visuals and examples as they are significant part of approaches and concepts • The idea that it’s a collaboration and the patient will be consulted and listened to along the way.   Which framework(s) to use? • BC MOH/Health Quality Ontario Combo • BC MOH as template • BC MOH  Vision or goal statement: one respondent = vision one respondent = goal  Level of engagement wording: No clear consensus. Different respondents chose wording all over the map: Share (2), Educate, Gather Information (2), Consult, Empower, Partner (2) There was a common opinion that levels of engagement weren’t really ensuring partnership or promoting PCC  This says to me there is a lot of confusion and disconnect around how we are engaging and what patient-family partners want from methods of engagement. How can we rethink/come together more on these methods.   Miscellaneous findings:  • Needed a clearer explanation of why the project is important/purpose, what will the impact be • Can’t engagement start with involve Who comes to these types of workshops? They are usually white privilege.    	   69 Appendix E: The Providence Health Care Person and Family Engagement Framework 	   	  	   70 The	  Providence	  Health	  Care	  Person	  and	  Family	  Engagement	  Framework	  	  The	  Framework	  Goal:	  	  The	  goal	  of	  our	  framework	  is	  to:	  1. Provide	  an	  exceptional	  patient1	  and	  family2	  experience	  2. Create	  highly	  engagement	  capable	  environments	  3. Work	  together	  to	  develop	  the	  tools	  &	  resources	  needed	  for	  patients	  and	  families	  to	  be	  full	  partners	  in	  their	  own	  care	  	  	  Enablers	  of	  Engagement	  Meaningful	  engagement	  at	  Providence	  Health	  Care	  is	  enabled	  by	  the	  values	  we	  live	  everyday:	  • A	  culture	  that	  is	  dedicated	  to	  learning	  and	  continuous	  improvement	  • Recognition	  that	  patients	  and	  family	  members	  are	  equal	  and	  important	  partners	  in	  care	  • As	  a	  faith-­‐based	  organization,	  consideration	  for	  the	  spirituality	  and	  compassion	  that	  dwells	  within	  us	  all	  • Acknowledgement	  that	  we	  are	  part	  of	  shaping	  the	  health	  and	  well-­‐being	  of	  a	  larger	  community	  	  	  Guiding	  Principles:	  Underpinning	  this	  framework	  are	  guiding	  principles	  that	  all	  patients,	  family	  and	  health	  professionals	  must	  follow	  in	  order	  to	  support	  meaningful	  engagement	  activities:	  • Mutual	  Respect	  -­‐	  Patients,	  families	  and	  health	  professionals	  acknowledge	  and	  value	  each	  other’s	  expertise	  and	  experiences.	  	  • Transparency	  -­‐	  Health	  professionals	  are	  honest	  about	  their	  apprehensions,	  resource	  limitations	  and	  knowledge	  gaps	  when	  it	  comes	  to	  engaging	  with	  patients	  and	  family.	  	  • Inclusiveness	  -­‐	  Engagement	  brings	  together	  a	  diversity	  of	  patient	  and	  family	  perspectives,	  and	  outcomes	  are	  reflective	  of	  their	  contributions.	  	  • Partnership	  -­‐	  Meaningful	  engagement	  requires	  authentic	  and	  mutually	  beneficial	  relationships	  between	  patients,	  families,	  health	  professionals	  and	  Providence	  Health	  Care	  	  • Trust	  -­‐	  patients	  and	  families	  need	  to	  feel	  that	  they	  are	  supported	  to	  openly	  express	  their	  needs,	  perspectives	  and	  concerns	  without	  fear	  of	  losing	  quality	  care,	  and	  to	  make	  informed	  decisions	  with	  confidence.	  	  • Responsiveness	  –	  Providence	  Health	  Care,	  and	  its	  health	  professionals,	  commit	  to	  acknowledging	  and	  responding	  to	  the	  voices	  of	  patients	  and	  families.	  This	  includes	  being	  clear	  about	  the	  purpose	  of	  engagement	  from	  the	  outset	  and	  embracing	  open	  and	  honest	  communication	  throughout	  the	  entire	  process.	  	  	   71 The	  Engagement	  Spectrum	  	  	  1Patient	  is	  an	  individual	  under	  the	  care	  of	  the	  hospital/residential	  care	  setting	  who	  has	  his	  or	  her	  own	  set	  of	  beliefs	  and	  habits,	  and	  his	  or	  her	  own	  unique	  family	  and	  support	  group.	  In	  this	  framework	  the	  term	  patient	  is	  intended	  to	  be	  inclusive	  of	  clients,	  residents	  and	  tenants	  served	  by	  Providence	  Health	  Care.	  	  2Family	  is	  defined	  by	  the	  patient.	  When	  the	  patient	  is	  unable	  to	  define	  family,	  the	  patient’s	  substitute	  decision	  maker	  provides	  the	  definition.	  Family	  members	  are	  the	  people	  who	  provide	  the	  primary	  physical,	  psychological,	  or	  emotional	  support	  for	  the	  patient.	  Family	  is	  not	  necessarily	  blood	  relatives.	  Family	  members	  are	  integral	  to	  the	  overall	  well-­‐being	  of	  the	  patient. 

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