Harnessing Evidence And Experience To Change Culture A Guiding Framework For Patient And Family Engaged Care

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DISCUSSION PAPER Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care Susan B. Frampton, PhD, Planetree;…
DISCUSSION PAPER Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care Susan B. Frampton, PhD, Planetree; Sara Guastello, Planetree; Libby Hoy, PFCCpartners; Mary Naylor, PhD, FAAN, RN, University of Pennsylvania School of Nursing; Sue Sheridan, MBA, MIM, DHL, Patient-Centered Outcomes Research Institute; Michelle Johnston-Fleece, MPH, National Academy of Medicine January 31, 2017 ABSTRACT | Patient and family engaged care (PFEC) is care planned, delivered, managed, and continuously improved in active partnership with patients and their families (or care partners as defined by the patient) to ensure integra- tion of their health and health care goals, preferences, and values. It includes explicit and partnered determination of goals and care options, and it requires ongoing assessment of the care match with patient goals. This vision represents a shift in the traditional role patients and families have historically played in their own health care teams, as well as in ongoing quality improvement and care delivery efforts. PFEC also represents an important shift from focusing solely on care pro- cesses to aligning those processes to best address the health outcomes that matter to patients. In a culture of PFEC, patients are not merely subjects of their care; they are active participants whose voices are honored. Family and/or care partners are not kept an arm’s length away as spectators, but participate as integral members of their loved one’s care team. Individuals’ (and their families’) expertise about their bodies, lifestyles, and priorities is incorporated into care planning and their care experience is valued and incorporated into improvement efforts. A prevalent and persistent challenge to a system-wide and outcomes. To achieve this goal, the SAP drew on transformation to PFEC is uncertainty about whether both the scientific evidence and the lived experiences the resource investment required will lead to better of patients, their care partners, practitioners, and lead- results. There is also a lack of clarity about how, practi- ers to develop a comprehensive framework that ex- cally speaking, to make it happen. plicitly identifies specific high-impact elements neces- To address these barriers, the National Academy sary to create and sustain a culture of PFEC. Research of Medicine’s (NAM’s) Leadership Consortium for a in support of the various elements of the model was Value & Science-Driven Health System convened a then compiled into a selected bibliography. This paper Scientific Advisory Panel (SAP) to compile and dissemi- introduces the framework and associated evidence, nate important insights on culture change strategies. along with practical examples of elements of the mod- The SAP’s focus was on evidence-based strategies that el applied in the “real world,” with the goal of support- facilitate patient and family engagement and are tied ing action that will pave the way for PFEC to become to research findings revealing improved patient care the norm in health care. Perspectives | Expert Voices in Health & Health Care DISCUSSION PAPER The SAP thoroughly discussed the terminology to by the patient) to ensure integration of their health use within the framework, cognizant that terms such and health care goals, preferences, and values. It in- as “person-centered” and “people-centered” are in- cludes explicit and partnered determination of goals creasingly used in the field. Because this paper and the and care options, and it requires ongoing assessment guiding framework it introduces are largely focused on of the care match with patient goals. See Box 1. As a care delivered by health care organizations to individu- result of this new paradigm, the enormous potential to als accessing the system, the authors have chosen to improve health and health care outcomes by actively use the term “patient and family” engaged care, while engaging patients and families as true partners in their reserving the term “person and family engagement” care and in the redesign of health care systems and for other health and health care activities aimed at en- processes has caught fire among practitioners, policy gaging and empowering individuals in the community makers, executives, researchers, and academics. This, and/or outside a health care setting. in turn, has accelerated the pace of inquiry and ex- ploration into which PFEC strategies have a positive Introduction impact, what makes them effective, and what makes Patient and family centered care (PFCC) has been them sustainable. identified as a cornerstone of the national strategy for Despite efforts to make PFEC a predominant feature delivering better care and achieving better patient ex- in all health care interactions, it remains an aspiration- periences at a lower cost. Until fairly recently, efforts al aim. These efforts have not resulted in a comparable to promote PFCC have focused primarily on changing pace of culture change and care delivery in hospitals, the behaviors of patients (and, increasingly, families). physician offices, patients’ homes, and all of the con- These endeavors simultaneously treated patients as texts where patients receive care (Bernabeo and Holm- presenting “the problem to be fixed” while relying on boe, 2013; Herrin et al., 2016). them to provide insights to improve the health care Despite a significant amount of scientific inqui- delivery system via cursory efforts lacking structure. In ry and emerging consensus on the resulting evi- hindsight, it is understandable that such efforts have dence, intrinsic value and benefits of PFEC, there not yet yielded widespread, sustainable transforma- is less clarity or consensus about the most effec- tion of our health care delivery system. tive ways to move universal adoption forward. An Not surprisingly, it is the long-standing work of important barrier to more widespread adoption is dedicated patients, families, and patient advocacy the lack of a comprehensive, credible, and widely organizations to reform our health system toward accessible evidence base for PFEC to inform change ef- patient-centeredness that has brought clarity to what forts. In many ways, the PFEC evidence base has been a it really means to be patient and family centered. Their casualty of a very narrow definition of what constitutes efforts have helped to highlight the shortcomings of evidence. Knowledge derived from the traditional, bio- token efforts toward engagement and have brought to medical research model in support of PFEC may be light the discrepancies between the health outcomes limited (and is growing), but it is important to consider prioritized by clinicians and those that matter most to all the knowledge available to us, including insights de- patients. As a result, health care leaders are now more rived from the “experience base.” This base includes cognizant of their roles in driving a patient-centered day-to-day problem solving in the lives of frontline cli- culture of care that continuously integrates patient and nicians and patients and families. In the current state family perspectives and involvement—at the point of of PFEC, we find that available research could be sub- care, in health care system design, and in defining out- stantially augmented by experiential knowledge. Limit- comes that matter most. PFCC and patient and family ing activities that support a culture of PFEC based on engagement, today, both embrace partnership—work- reported research may significantly underestimate the ing with patients and families, not simply doing to and knowledge available to drive change. The experiences for them. This fundamental shift represents, we assert, of patients and their care partners represent a vital a shift to patient and family engaged care (PFEC). dimension of this emerging knowledge base. What PFEC is care planned, delivered, managed, and matters most to patients concerning their health out- continuously improved in active partnership with comes coupled with their personal care experiences patients and their families (or care partners as defined and observations regarding how the health system Page 2 Published January 31, 2017 Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care BOX 1 Patient and Family Engaged Care Patient and family engaged care (PFEC) is care planned, delivered, managed, and continuously improved in active partnership with patients and their families (or care partners as defined by the patient) to en- sure integration of their health and health care goals, preferences, and values. It includes explicit and partnered determination of goals and care options, and it requires ongoing assessment of the care match with patient goals. Adapted from Institute of Medicine, Transforming Health Care Scheduling and Access: Getting to Now, 2015. operates are essential contributions to creating a findings and insights on culture change strategies that culture of PFEC. facilitate PFEC. In particular, the group was asked to To realize the aspirations of PFEC as a new norm in focus on aspects of PFEC with validated results tied health care, it is important to acknowledge that true to better culture, better health outcomes, better care, transformation is not about addressing the “patient and lower costs. This compilation would be organized and family problem,” the “clinician problem,” the “lead- into a guiding framework explicitly depicting the struc- ership problem,” or the “payer problem.” Rather than ture, practices, and approaches health care systems casting these various players as the “problem,” it is cru- may ultimately adopt to realize the potential of PFEC cial to understand that all of these stakeholder groups to improve health and health care, support future evi- are part of the solution. The actions, behaviors, and at- dence generation, and produce greater value. titudes of each of these groups (plus many more) all intersect to create the culture of health care delivery. Convening the Scientific Advisory Panel To accelerate culture transformation, the experiences Leadership for the SAP was provided by Planetree, of all who interact with the health care system must Inc., a not-for-profit patient-centered care education, guide the change. Having a framework that identifies membership, and advocacy organization founded by a how to guide and manage change of that magnitude, patient in 1978. The 25 individuals invited by the NAM along with a compilation of supportive evidence, is to serve on the panel brought an essential mix of per- essential. Absent a guiding framework for integrating spectives to the initiative. Panelists included clinical PFEC across health care settings, PFEC continues to be and health service researchers, health care practitio- a “nice to have” rather than a “must have” to achieve ners, and patient and family leaders. Importantly, out- high-quality, safe, and efficient care. reach efforts for panelists extended beyond the “usual suspects.” This was certainly not to devalue the impor- Approach tant insights of familiar faces who have been advocat- To respond to the need for a framework that would ing for PFEC change for years, but rather to make room deliver greater specificity, clarity, and direction on at the table for a growing cadre of researchers who are what it will take to make PFEC the norm in health care, studying the impact of often overlooked dimensions the SAP for the Evidence Base on Patient and Family of PFEC, and whose work, when accumulated and syn- Engaged Care was convened under the auspices of thesized, significantly advances the scientifically based NAM’s Leadership Consortium for a Value & Science- case for PFEC. See Appendix A. Driven Health System. The efforts of the SAP also The composition and structure of this group mod- were designed to support and inform the work of the els the nature and power of partnership at the heart Consortium’s Care Culture and Decision-Making In- of PFEC. The convergence of these various perspec- novation Collaborative (CCDmIC). The SAP was tives contributed significantly to the comprehensive, empaneled to compile and disseminate important cumulative, and, ultimately, very practical distillation of NAM.edu/Perspectives Page 3 DISCUSSION PAPER current knowledge and experiences into a framework to create a culture of PFEC; (2) examine the relation- for PFEC that speaks to different audiences. ships between these items; and (3) clarify intended From December 2015 through May 2016, the SAP outcomes and how the various inputs drive the de- worked to: sired results. Development of the framework was an iterative process. The initial draft was created 1. Identify elements and factors that consistently in consideration of the common elements and pat- emerge as essential to creating and maintaining a terns for PFEC identified during the group’s first call, culture of PFEC; panelists’ research findings, and an informal scan of 2. Organize those tools, strategies, and cultural ele- related logic models (Béliveau, 2015; Singer and Vo- ments into an easy-to-follow framework; gus, 2013). During the course of the next 4 months, 3. Compile evidence in support of the framework; and the framework was refined to align with the experi- 4. Identify gaps in the evidence. ence, expertise, and scientific knowledge of the pan- elists. Final refinements were made in the publication Each step is described in more detail below. phase in response to SAP member recommendations Identifying Common Elements and Factors for Creating and patient and family feedback that the framework and Maintaining a Culture of PFEC be graphically polished to ensure readability for numerous audiences, including patient and family This activity was kicked off with brief presentations by partners and frontline staff. health care executives at three sites—an acute care hospital [1], a behavioral health hospital [2], and a fed- Overview of the Guiding Framework erally qualified health center [3] that have successfully In effect, the group has approached the task by looking created and sustained a culture of PFEC. Both hospitals at the outcomes sought by patient and family engaged have been recognized with Patient-Centered Hospital care, and then moving backward through the trans- Designation by Planetree and the federally qualified formational stages to understand the related practice health center has been recognized as a Level 3 Patient- outputs needed, the strategic inputs to yield those Centered Medical Home by the National Committee elements, and the organizational foundations to craft for Quality Assurance (NCQA). Though the organiza- the strategies. Figure 1 presents the broad overview of tions vary in size, services, complexity, and length of the framework. experience implementing PFEC, there nonetheless In Figure 2, the core elements of each transfor- were several notable commonalities. See Table 1. mational stage for patient and family engaged care Creating the Framework are presented: the engagement outcomes of better Recognizing the need for an easy-to-follow guide, culture, better care, better health, and lower costs; the SAP aimed to create a framework, grounded in the practice outputs of better engagement, better evidence, that would (1) identify the key cultural, decisions, better processes, and better experience; structural, and programmatic elements that coalesce the strategic inputs of structures, skill and awareness Table 1 | Summary of Common Elements and Patterns Identified for Creating and Maintaining a Culture of Patient and Family Engaged Care Cultural Elements Infrastructure Practices and Tactics • Investment and intenionality in • PFEC fully integrated into organizational • Environmental supports to facilitate PFEC creating a supportive and trusting structure and strategy—not a stand-alone • Practices that promote patient and family workplace culture initiative engagement • Emphasis on empathy and • Structured communication channels devel- • Learning opportunities at every patient compassion oped to break through hierarchy and “level touchpoint • Leadership sets the tone set” to promote partnership of all mem- • Eagerness to innovate bers (leaders, staff, patients, families)— • Creation of a learning culture coproduction, shared goals • A measurement approach that looks be- yond patient experience metrics to gauge PFEC Page 4 Published January 31, 2017 Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care Figure 1 | Overview of Patient and Family Engaged Care: A Guiding Framework Figure 2 | Overview and core elements for Patient and Family Engaged Care: A Guiding Framework building, connections, and practices; and the organiza- ment, and even at the macro level to guide policy de- tional foundations of leadership and levers for change. velopment) and in which a more engaged workforce Organized as such, the framework meets the needs experiences greater joy in practice. All other elements of health care leaders as well as patient and family of the framework drive toward this vision of a high- partners by demystifying PFEC, providing guidance in quality, high-value health care system. Therefore, se- implementation priorities and sequencing, and, finally, quentially (and logically), all elements of the framework illustrating why this work is worth doing by empirical- precede the outcomes. A discussion of these desired ly tying implementation to outcomes. We expect the impacts is warranted as the first point of reference, framework and associated bibliography will be a useful however, for reviewing the tool. resource for both health care leaders and patient and Better Culture family leaders to draw on in cultivating more effective partnerships and will serve as a tool to create greater The inclusion of outcomes related to the experience receptivity among institutions for implementing these of health care professionals underscores that organi- PFEC strategies. zational culture and the delivery of effective and com- Figure 3 presents a robust depiction of the frame- passionate care cannot be separated from those who work with many of the key elements identified. De- are delivering that care. The prevalence of burnout scribed below is a more detailed explanation of major and disengagement among health care professionals elements of the model framework and a companion is not a concern peripheral to the quality of care; it is bibliography detailing select evidence for the major el- central to it (Bodenheimer and Sinsky, 2014). The in- ements of the model is presented in Appendix B. terconnectedness of how PFEC touches and influences organizational culture, including the experiences of Outcomes both patients and family caregivers and health care professionals, is supported by evidence tying PFEC The genesis for creating the framework was a desire to approaches to examine and depict the premise that PFEC is a driver of an expanded notion of the “Quadruple Aim” of bet- • Improvements in the staff experience (Atwood et ter health, better care, lower costs, and better work al., 2016; Coulmont et al., 2013; McClelland et al., experience for providers of patient care (Bodenheimer 2016), and Sinsky, 2014). The SAP extended the fourth aim • Improved staff retention (Coulmont et al., 2013), to be an overall culture of engagement: one in which • Reduction in job stress (Bosch et al., 2012), patients and family caregivers are meaningfully and Greater satisfaction with interactions with patients continually involved in decision making at all levels (Bozic et al., 2013), (i.e., at the personal level at the point of care, at the Lower rates of staff burnout (Gazelle et al., 2015; organizational level in system-level quality improve- Nelson et al., 2014), NAM.edu/Perspectives Page 5 Page 6 Patient and F
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