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Action brief: Patient engagement and activation: A health reform imperative and improvement opportunity for nursing

      About the Action Brief Series: Nursing Performance Measurement: A Strategic Imperative in Transforming Health Care (from
      • Lamb G.
      • Donaldson N.
      Performance measurement—A strategic imperative and a call to action.
      )

      In 2010, the American Academy of Nursing (AAN) Expert Panel on Quality Health Care (QHC) identified performance measurement in the transforming health care delivery system as a strategic imperative and agreed that a synthesis of key concepts was needed to guide policy and provide direction for the AAN and nursing's partners in health care.
      Envisioned as a “call to action,” the AAN QHC Expert Panel affirmed the foci of target papers, recruited members as lead authors and co-authors, and launched an ambitious effort to develop 6 substantive position papers and action briefs. Topics of these papers include:
      • Measuring Episode of Care Outcomes
      • Measuring Care Coordination
      • Measuring the Economic Value of Nursing
      • Measuring Nurses' Workload
      • Measuring Patient Engagement
      • Harmonizing Performance Measures—Implications for Practice, Education, and Research.
      The first 2 papers, developed by writing teams led by Drs. Joyce Verran and Gerri Lamb, were presented at the AAN's Pre-Conference on October 14, 2011. Patient Engagement & Activation: A Health Reform Imperative and Improvement Opportunity for Nursing, an action brief, authored by Luc R. Pelletier and Dr. Jaynelle F. Stichler, was completed in March 2012. Additional papers under development are currently on track for draft review and all papers will be forwarded to the AAN's Board of Directors for review and endorsement.
      The AAN QHC Expert Panel acknowledges the direct and indirect contribution of its dedicated members, particularly the thought leaders whose insight and expertise are shaping this work. Importantly, the AAN QHC Expert Panel is collaborating with other AAN Expert Panels in reviewing emerging papers and is informally collaborating with organizations that share a commitment to advancing nursing's performance measurement imperative.

      Health Care Reform Imperative

      In the midst of health care transformation, nursing has a critical role in the effort to ensure that patients are fully engaged and active in their health and care. Professional nurses, the largest group of health professionals in the United States, have a well-established tradition of engaging patients and families, encompassing “autonomous and collaborative care of individuals of all ages, families, groups and communities, sick or well and in all settings” (

      International Council of Nurses. (2010). Definition of nursing. Retrieved from http://www.icn.ch/about-icn/icn-definition-of-nursing/.

      , ¶1).
      Nursing has focused on patient-centered care (PCC) as a care delivery model for decades and has led the health care team in empowering patients through education and culturally sensitive care programs and services. The nurse–patient relationship has been central to nursing's definition of PCC.
      The concept of relationship-based care was born from the nursing paradigm with several nursing theories supporting the therapeutic relationship between the nurse and patient as the foundation for care delivery (
      • Koloroutis M.
      Relationship-based care: A model for transforming practice.
      ). A hallmark of professional nursing practice is skillfully engaging patients in the care process. Through the interpersonal aspects of professional nursing care, nurses are accountable for establishing relationships that support patient engagement (PE) and activation, which ultimately lead to improved health outcomes.
      Health care reform provides an opportunity for nursing to lead the way in measuring performance in the area of PE and activation. However, there is a dearth of literature and scientific inquiry regarding PE and nursing's role in facilitating patient activation. This Action Brief summarizes the current imperatives of PE and activation, the state of nursing science, and some potential solutions to filling the gap in science and performance measurement related to PE and activation.
      Through wide dissemination of these recommendations, the American Academy of Nursing hopes that nursing science in this area will be advanced.

      Definitions

      Patient and Family-centered care is defined as care that is: (1) considerate and respectful of patients' beliefs, values, and personal meanings associated with their state of wellness or illness; (2) inclusive of patients' personal and social support systems; (3) delivered in the context of a caring, therapeutic partnership between patient and provider; (4) integrated and coordinated across a continuum of services, providers, and settings; (5) empowering with the education, information, and evidence necessary to enable and engage patients in their own health care; and (6) activating by facilitating patients' use of internal and external resources to manage their own care.
      Empowerment relates to providing patients with access to information, education, support, and skills that facilitates their role as partners with providers in decisions and actions in their own care (
      • Frampton S.B.
      • Gilpin L.
      • Charmel P.A.
      Putting patients first.
      ;

      National Research Corporation [NRC Picker]. (2011). Eight dimensions of PCC. Retrieved from http://www.nrcpicker.com/member-services/eight-dimensions-of-pcc/.

      ;
      • Silow-Carroll S.
      • Alteras T.
      • Stepnick L.
      Patient-centered care for underserved populations: Definition and best practices.
      ). Patient empowerment is an essential component of the Nursing Scope and Standards of Practice (
      • American Nurses Association
      Nursing scope and standards of practice.
      ). Empowerment is the first step in the PCC paradigm and is an important antecedent to PE and activation.
      Engagement is “a set of behaviors by patients, family members, and health professionals and a set of organizational policies and procedures that foster both the inclusion of patients and family members as active members of the health care team and collaborative partnerships with providers and provider organizations….the desired goals of patient and family engagement include improving the quality and safety of health care…” (
      • Maurer M.
      • Dardess P.
      • Carman K.L.
      • et al.
      Guide to patient and family engagement: Environmental scan report.
      , p. 9).
      Activation describes the degree of PE as an active agent in the management of his/her own health including developmental stages “… of 1) believing the patient role is important, 2) having the confidence and knowledge necessary to take action, 3) actually taking action to maintain and improve one's health, and 4) staying the course even under stress” (
      • Hibbard J.H.
      • Stockard J.
      • Mahoney E.R.
      • Tusler M.
      Development of the Patient Activation Measure (PAM): Conceptualizing and measuring activation in patients and consumers.
      , p. 1005; see Figure 1).

      State of the Science

      A review of the literature yielded minimal results related to patient and family engagement performance measures. The National Quality Forum (NQF), in collaboration with the Robert Wood Johnson Foundation, developed nurse-sensitive performance measures under its Core Measures for Nursing Care Performance Project (
      National Quality Forum [NQF]
      National voluntary consensus standards for nursing-sensitive care: An initial performance measure set.
      ). None of these measures address patient and/or family engagement.
      The National Database of Nursing Quality Indicators (NDNQI) contains no performance measures related to patient and family engagement. The absence of PE measures endorsed by the NQF and adopted by nursing sensitive benchmarking registries such as NDNQI and the Collaborative Alliance for Nursing Outcomes can be attributed to the dearth of nursing-sensitive PE-related measures arising from clinical research, the ultimate source of measures for benchmarking and public reporting.

      Solutions

      Patient empowerment and engagement processes ultimately lead to activation of the patient's internal and external resources to manage his or her own health experiences. In synthesizing the relevant literature on PCC, PE, and activation, a conceptual model of the structures, processes, and outcomes of PE emerged as a model of care (see Figure 2). At the core or center of the model are the engaged, activated patient and family. Relationship-based care through a healthy work environment ensures an accessible, well-organized, accountable, supportive health care system. Through partnerships and family-centered care, an activated patient emerges as actively involved in his/her health care, which leads to improved health care outcomes.
      To fill the gap in performance measures related to PE and activation, it is critical that instruments to measure PCC and PE be developed, psychometrically tested, and used to examine the impact that a PCC approach and PE interventions have on patient/family activation and other important outcomes. To address the imperative of engaging patients and families in their care, and in light of the fact that there is a dearth of nurse-sensitive PE and activation measures, it is critical that action be taken in the spheres of nursing practice, research, education, and policy. These proposed actions are targeted to a wide audience for broad implementation.

      Action Steps

      • 1.
        Practice
        • a.
          Develop conceptual definitions for PCC, PE, and patient activation;
        • b.
          integrate PE measures in electronic health record systems;
        • c.
          identify and develop PCC and PE and activation professional nursing models of care;
        • d.
          develop behavioral competencies for the professional nurse and other providers related to PCC, PE, and activation;
        • e.
          define patient and family competencies for enabling PE and patient activation;
        • f.
          define the specific roles for professional nurses to ensure PE in Accountable Care Organizations, inpatient settings, and community-based settings;
        • g.
          promote healthy work environments in which PE can flourish;
        • h.
          establish PE as a core element of nursing practice;
        • i.
          identify those specific nursing interventions that support PE and activation; and
        • j.
          adopt key strategies and interventions shown to increase PE (Mauer, Dardess, Carman et al., 2012, pp. 43-52).
      • 2.
        Research
        • a.
          Develop instruments to measure PCC, PE, and patient activation as contrasted to other related concepts, such as quality of nursing care, patient satisfaction, or nursing care delivery models;
        • b.
          develop measures to assess how patient/family engagement and activation affects health outcomes, including self-management of chronic diseases and healthy lifestyle behaviors (
          National Priorities Partnership
          Nursing and the National Priorities Partnership: Aligning efforts to transform America's healthcare: One vision, one voice.
          , p. 13);
        • c.
          propose a nursing research trajectory: nurse-sensitive patient/family engagement and activation processes that lead to patient activation;
        • d.
          prioritize development of nursing science in these areas:
          • patient feedback on preferences, functional outcomes, and experiences of care into all care settings and care delivery;
          • use of electronic health record that capture the voice of the patient by integrating patient-generated data; and
          • measurement of PE and activation (self-management), shared decision-making, and patient-reported outcomes (
            • U.S. Department of Health and Human Services
            National strategy for quality improvement in health care.
            , p. 24);
        • e.
          create tools and toolkits to support patient and family engagement and activation in care (e.g., identify PE activities; develop documents tailored to the patient and family; NPP, p. 13);
        • f.
          fund research that examines how PE affects the use of health care services and invasive procedures, and health care costs (NPP, p. 14);
        • g.
          prioritize studies that focus on ways to initiate and sustain behavior change in patients and providers (NPP, p. 14); and
        • h.
          expand campaigns to include research and/or evidence-based PE supportive practices.
      • 3.
        Education
        • a.
          Focus interprofessional education related to PE on skills-building, best practices, and cultural sensitivity (NPP, p. 14);
        • b.
          teach health professionals how to assess patients' beliefs, readiness to engage, personal goals for health, understanding of their condition, and knowledge about prevention (NPP, p. 14);
        • c.
          prepare faculty to identify and support skills that will reinforce high PE behavior with patients and family (NPP, p.14);
        • d.
          develop setting-specific strategies for educating staff on ways in which to engage with patients and families (NPP, p. 14);
        • e.
          promote competencies in PCC, PE, and activation for all levels of nursing education; and
        • f.
          recommend adoption of Quality and Safety Education for Nurses quality and patient safety modules for academic institutions and service organizations.
      • 4.
        Policy
        • a.
          Develop financial incentives for nurses to engage with patients and families (NPP, p. 13);
        • b.
          advocate for funding of nursing research and performance measure development in the areas of PE and activation (e.g., National Institute of Nursing Research, Robert Wood Johnson Foundation);
        • c.
          engage consumers in policy development activities;
        • d.
          encourage funding of nurse-managed supportive services that are required for those vulnerable individuals that lack the capacity to engage in treatment;
        • e.
          link the PE and Activation Model of Care with Quality and Safety Education for Nurses, Nursing Alliance for Quality Care, and other national nursing/healthcare initiatives to advance quality and safety outcomes;
        • f.
          integrate the PE and Activation Model of Care into the Commission on Collegiate Nursing Education and American Association of Colleges of Nursing standards for baccalaureate and graduate nursing education; and
        • g.
          encourage NDNQI and Collaborative Alliance for Nursing Outcomes to develop and include PE and activation measures as a means of validating nursing's unique contributions to quality and safety outcomes.

      Acknowledgments

      The authors would like to thank the following for their thoughtful review and feedback: Nancy E. Donaldson RN, DNSc, FAAN, Clinical Professor and Director, UCSF Centre for Evidence-Based Quality Improvement A JBI Affiliate Centre, San Francisco, California; and Susan Beck PhD, APRN, FAAN, Robert S. and Beth M. Carter Endowed Chair in Nursing, Director, PhD Program, Professor, College of Nursing, University of Utah, Salt Lake City, Utah.
      Endorsed by the American Academy of Nursing Board of Directors, July 11, 2012.

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        • Gilpin L.
        • Charmel P.A.
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        • Mahoney E.R.
        • Tusler M.
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        • Alteras T.
        • Stepnick L.
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