JONA Volume 44, Number 9, pp 473-480 Copyright B 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins
THE JOURNAL OF NURSING ADMINISTRATION
Patient-Centered Care and Engagement Nurse Leaders’ Imperative for Health Reform Luc R. Pelletier, MSN, APRN, PMHCNS-BC, FAAN Jaynelle F. Stichler, DNS, NEA-BC, FACHE, FAAN Although there is agreement about the importance of patient-centered care (PCC) to ensure optimal outcomes for patients, there is a lack of focused instruments to measure PCC. The aims of this article were to synthesize literature related to the concepts PCC and to provide concrete attributes, definitions, and a conceptual model for the concept of PCC Ask any clinical nurse or physician if he/she provides patient-centered care (PCC) and the answer will most likely be ‘‘yes’’. Although there is emphasis on PCC in nursing and among other healthcare professionals, ambiguity exists about the concept of PCC and how is it operationalized with the individual patient or at the unit and organizational level. Patient-centered care is emerging as a core value in support of evidencebased healthcare1 and is considered integral to the achievement of quality patient outcomes. Although there is agreement about the importance of PCC to ensure optimal outcomes for patients, there is a lack of focused instruments to measure PCC. Patient experience results are often used as a proxy for PCC. Perhaps, the scarcity of actual measures of PCC is because the definition, attributes, and competencies needed to ensure PCC have yet to be clearly accepted by nurses and
Author Affiliations: Administrative Liaison (Mr Pelletier), Sharp Mesa Vista Hospital, Core Adjunct Faculty, National University, San Diego, California; Professor Emerita (Dr Stichler), Nursing, San Diego State University, and Consultant, Research & Professional Development, Sharp Mary Birch Hospital for Women & Newborns and Sharp Memorial Hospital, San Diego, California. The authors have no conflicts of interest to disclose. Correspondence: Dr Stichler, PO Box 28278, San Diego, CA 92064 ([email protected]). Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.jonajournal.com). DOI: 10.1097/NNA.0000000000000102
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other providers. Patient-centered care has been characterized as meaningful interpersonal relationships between the patient and the provider(s) and honoring the whole person and family, respecting individual values, preferences and choices, and ensuring continuity of care with the goal of ensuring a positive patient experience.2,3 The aims of this article were to synthesize literature related to the concepts of PCC and provide concrete attributes, definitions, and a conceptual model for the concept of PCC because the concept and its application and evolution are quality priorities for nursing leaders.
Review of the Literature A review of the literature was conducted using the method described by Polit and Beck.4 Eight electronic databases were searched from 2000 to 2013 with the addition of references for relevant papers reviewed. The search was limited to papers published in English. The databases included ScienceDirect, Ovid, ProQuest, PubMED, CINAHL, PsychINFO, and Google Scholar. The following keywords and MeSH terms were used for the search: PCC, patient activation, and patient engagement. Articles were included if the focus was on the definitions or concept analysis of the key terms. Articles were excluded if the primary focus was on patient satisfaction or other terms or measurements that are used as a proxy to PCC. Of the 64 publications initially identified, 40 met the sample inclusion criteria. The 32 studies included 16 systematic reviews, 14 quantitative studies, and 4 qualitative studies. Other nonYevidence-based articles included books on patient care quality, organizational policy briefs, government bulletins, health policy briefs, organizational newsletters, and review articles focusing on PCC.
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Recognizing that patients who are involved in their own care have better outcomes, the Institute of Medicine (IOM), in Crossing the Quality Chasm,5 recommended that to improve quality healthcare systems, health systems need to develop patient centeredness by serving patients in a manner that is respectful of their individual preferences and values and ensures that patients are fully informed and involved in decisions and actions related to their plan of care. The IOM recommended that patient care must be less provider driven and more patient and family centered. Similarly, the Agency for Healthcare Research and Quality (AHRQ)6 in the National Health Quality Report identified 2 essential components of PCCVthe patient experience and patient partnerships. The AHRQ characterized the patient experience as communicating to and educating the patient in a meaningful way that informs the patient adequately, enabling the patient to engage in his/her own care through partnerships with the care providers. In PCC, nurses and other healthcare providers individualize the patient’s care according to the patient’s needs, values, and preferences. The founders of the Planetree initiative7 stated that PCC respects the patient’s perspective, prepares them to participate in their own care, and is the most effective approach to improve healthcare quality. These authors indicated that patients expect quality technical care as a basic element of quality care, but they also expect ‘‘respect, kindness, privacy, information, autonomy, choices and inclusion.’’7(pxxxiv) Various organizations have both defined and endorsed PCC, including the Picker Institute,8 the Commonwealth Fund in the Commonwealth Fund’s 2020 Vision of Patient-Centered Primary Care,9 and the National Priorities Partnership (NPP).10 Using the Picker Institute’s dimensions of PCC as a foundation, the Kellogg Foundation developed a definition of PCC for underserved populations outlining key institutional supports and processes that would be needed to ensure that PCC was endorsed as an organizational culture.11 Patient feedback and measures of PCC, workforce development, and leadership committed to patient centeredness were considered critical to the development of a PCC culture. Similarly, the National Cancer Institute (NCI) developed a model of PCC that includes the reciprocal relationship that is critical to improved communication between patients and providers to ensure health outcomes.12 Among all of these organizational definitions of PCC, there is a common theme of empowering the patient with information and involving and engaging the informed patient with the provider in planning and implementing a plan of care that meets the patient’s values and preferences. Most recently, in defining PCC from the accountable care organization perspective of a medical home
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model, the concept of PCC has focused more on the patient-as-person who shares power and responsibility for his/her care in the context of the patient’s perception of the illness as a unique experience influenced by the patient’s attitudes, knowledge, and personal meaning.13,14 The therapeutic relationship inherent in PCC also requires that providers be professionally and interpersonally competent with strong sense of self and personal values as a prerequisite or antecedent to achieving PCC.15 For PCC to be realized, ‘‘new health designs will involve some radical, unfamiliar, and disruptive shifts in control and power, out of those who give care and into the hands of those who receive it.’’16(pw555) Definitions of PCC described in the literature have many common attributes that describe the professional relationship with the patient, including respectful, supportive, therapeutic, caring, relationship based, enabling, empowerment, engagement, integrated, coordinated, collaborative, holistic, comforting, and knowledge expanding. The provider’s part in PCC is only 1 part of the equation, since the patient also plays a critical role ensuring the optimal outcomes expected as a result of PCC.
Patient-Centered Care Patient Engagement In more recent literature, the term PCC has recently become interchangeable with the term patient engagement (PE). With a goal of promoting patient and family engagement in hospitals, a Guide to Patient and Family Engagement17 was developed in collaboration with the AHRQ. The resulting definition highlights the importance of PE as a central focus of PCC. The report indicates that PE is the result of the individual characteristics, perspectives, and needs of patients, families, and providers; the organizational structures and processes that influence PE; and hospitalbased interventions that facilitate PE. Key strategies for engaging patients and specific interventions shown to facilitate PE and lead to positive outcomes are listed in Table 1. Collectively, these organizational definitions of PCC (see Document, Supplemental Digital Content 1, http://links.lww.com/JONA/A324) include similar attributes. By synthesizing definitions from the review of the literature (Table 2), common attributes of PCC can be 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
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Table 1. Key Strategies and Interventions to Increase PE Engage patients and families as part of the healthcare team Bedside rounds Bedside change of shift Patient/family-activated rapid response teams Specific efforts to increase family participation Access to medical records by patients and families Facilitating communication among patients, family members, and the care team Understanding which staff members are involved in the patient’s care Facilitating communication with physicians Using shared care plans/daily goal sheets Supporting increases in patient knowledge, skills, and abilities Engaging and supporting patients and families in transition planning Establishing systems for patients and family members to track medications and health records Accessing health information Involving patients and family members at the hospital level Establishing patient and family advisory councils Introducing other opportunities for patients and families to participate at the hospital level Eliciting patient and family member feedback Source: Maurer et al.17(pp44-52)
services, providers, and settings; (5) enabling with the education, information, and evidence necessary to engage patients in their own healthcare; and (6) activating and facilitating use of internal and external resources to manage their own care. A Conceptual Model for PCC and PE After the review of the relevant literature, common themes and components of PCC were identified and a conceptual model was developed using Donabedian’s structure, process, and outcome framework18 that illustrates the integration of PCC with PE and patient activation (PA) (Figure 1).19 At the core or center of the model are the empowered, engaged, and activated patient and family. Relationship-based care through a healthy work environment provides the context of care for providers and ensures an accessible, wellorganized, accountable supportive healthcare system for patients. Through partnerships and family-centered care, an activated patient emerges as actively involved in his/her healthcare, which leads to improved healthcare outcomes. Competencies Needed to Ensure PE Developing and implementing a patient-centered philosophy in healthcare require a sustained cultural change and commitment to viewing the patient as an engaged partner in care with a goal of activating his/her sense of self-management. Clearly, this philosophy calls for a specific set of complimentary values, beliefs, and
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competencies among providers. As health systems move from provider-centric models of care to a PCC model in which patients are the final decision makers in determining what treatment and care they receive,5 nurse leaders must ensure that nurses and other providers in their organizations demonstrate the competencies necessary to ensure PCC. Provider Competencies for PCC The NCI defined specific verbal and nonverbal providers’ behaviors to support PCC and identified 6 core functions of patient-centered communication between the provider and patient that lead to optimal health outcomes, including (1) responding to emotions, (2) exchanging information, (3) making decisions, (4) fostering healing relationships, (5) managing uncertainty, and (6) enabling patient self-management.12 Although not as explicit, other organizations such as the IOM, the Picker Group, the Institute of Patient-and FamilyCentered Care,20 AHRQ,6 NCI,12 and Quality and Safety in Nursing21 have also recommended professional competencies to ensure PCC. These organizations indicate that professionals must skillfully elicit patients’ values, beliefs, and preferences during the interview and assessment phases of the care process, respectfully communicate these values to other professionals on the interdisciplinary team, and integrate patients’ preferences into the plan of care. It is necessary for providers to advocate the patients’ access to care through referral systems and by integrating and coordinating care across multiple settings and providers. Providers must be effective educators and communicators with transparency about the patients’ condition and options available so that the patient can actively participate in decisions related to their care. The ability to develop a compassionate, therapeutic relationship with patients and engage them as partners in managing their care trajectory is critical because the future of healthcare will require patients to be fully informed and active in self-care management. Providers will also need to learn about various cultures and be sensitive to specific cultural influences on individual’s values and preferences as they educate and care for these patients.11 Nurse leaders must be committed to organizational culture changes that embrace PCC as the central focus of the service and the foundation for their care delivery processes and policies and ensure that the professional staff has the necessary competencies to deliver PCC. Patient Competencies for Engagement and Activation There is a dearth of literature about patients’ responsibilities and competencies to ensure patient-centered healthcare, but to support the implementation of PCC, patients must take an active role in their own care.22 To achieve PA, patients need access to understandable
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Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Institute for Patient-and-Family Centered Care20 NCI12
AHRQ Guide to Patient & Family Engagement17
Quality and Safety Education for Nursing33
An Exploration of Patient-Centeredness in Practice15
In the context of a medical homeIpersonalized care within a therapeutic relationship between the care provider and an engaged and informed patient
Patient-Centered Care in a Medical Home; Patient-Centeredness: A Conceptual Framework & Review of the Empirical Literature13,14
Isuperb access to high-quality, Ian approach to the planning, Ipatient-centered ‘‘a set of behaviors by patients, ‘‘Irecognize the patient Person-centered care isIa comprehensive care delivery, and evaluation of communication [is] eliciting family members, and health or designee as the standard of care that supported by information healthcare that recognizes and understanding the patient’s professionals and a set of source of control and places the patient in the systems, practice-based the importance of a perspective within his/her organizational policies and full partner in providing center of care delivery learning and quality patient-provider partnership own psychological and social procedures that foster both compassionate and processes that are based improvement. The care where providers acknowledge context, sharing power with the inclusion of patients and coordinated care based on the patient’s beliefs would be coordinated and the importance of emotional the patient by offering him/ family members as active on respect for the and values and engagement integrated across a team of and social support in her meaningful involvement members of the health care patient’s preferences, in shared decision making care providers with the healthcare, promote the in choices relating to his/her team and collaborative values, and needs’’ regarding his/her care. patient fully engaged in the well-being of individuals, health, and reaching a shared partnerships with providers and (p 123). PCC was described process and with routine and restore their dignity understanding of the provider organizationsI.the as being holistic and patient feedback to physicians and control patient’s problem and desired goals of patient and relationship-based with (providers). potential treatment or solution. family engagement include the provider having improving the quality and safety a sympathetic and of health care in a hospital therapeutic presence setting’’ (p 9).
NCR Picker and 2020 Vision of Patient-Centered Primary Care8,9
Table 2. Comparison of PCC Definitions
Figure 1. Patient-centered care model. Adapted from Patient/Family-centric Engagement Model.19
information (empowerment) and ‘‘will need to learn how to ‘negotiate’ with their providers in order to become true partners.’’12(p13) Some patients may elect to take a more passive role because of culture or individual knowledge, attitudes, and behaviors related to interactions with those they perceive to be in a hierarchical position with them. The intent of PCC, however, is to alleviate patient helplessness and facilitate PE and PA.
Outcomes of PCC Donabedian’s quality model of structure, process, and outcomes can also be applied to the enculturation of PCC.18 Organizations that espouse PCC as the focus of their care philosophy must create the structures, the mission, vision, and value statements and the policies, procedures, and care guidelines that support PCC. The patient care delivery methods, interdisciplinary collaboration, and patient-provider therapeutic relationships that lead to healing partnerships are the processes that create an enduring patient-centered culture. The implementation of PCC results in measurable outcomes for both patients and providers. Patient centeredness facilitates patients’ engagement in their own care, enables them with information for shared decision making, and activates their personal responsibility for mobilizing their resources for care and adherence to their collaboratively developed plan of
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care. Hospitals have experienced increased patient satisfaction levels and decreased costs and lengths of stay after implementing PCC philosophies such as Planetree.23,24 Other studies have demonstrated that a PCC approach to care in both inpatient and outpatient services has resulted in statistically significant changes in patients’ perceptions of finding common ground, improved emotional and physical health status, increased efficiency of care by reducing diagnostic tests and referrals, fewer symptoms of depression, greater self-efficacy to conduct self-care activities, and fewer ill days overall.23,25 Patients cared for in a PCC environment report greater satisfaction with the overall quality of the healthcare they received, including the technical quality of the services, their choice of providers, the continuity of care, and their communication with providers.23,26 A financial benefit has been reported from implementing PCC, with a significantly decreased annual number of visits for specialty care, less frequent hospitalizations, and fewer laboratory and diagnostic tests.27 Clearly, there is evidence to support the notion that PCC can result in positive patient, provider, and strategic organizational outcomes. PE Imperatives With Health Reform Several national imperatives have been disseminated regarding the future of healthcare and the role of the engaged consumer. The NPP, a collaborative effort of
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28 major national organizations that collectively represent every part of the healthcare system, identified a set of national priorities and goals to transform America’s healthcare system. Of the 6 priorities, the 1st was to ‘‘engage patient and families in managing their health and making decisions about their care.’’28(p7) The vision of the partnership was ‘‘We envision healthcare that honors each individual patient and family, offering voice, control, choice, skills in self-care, and total transparency, and that can and does adapt to individual and family circumstances, and to differing cultures, languages, and social backgrounds.’’28(p17) The NPP partners vowed to ensure the following: All patients will be asked for feedback on their
experience of care, which healthcare organizations and their staff will they use to improve care. All patients will have access to tools and support systems that enable them to effectively navigate and manage their care. All patients will have access to information and assistance that enables them to make informed decisions about their treatment options. 28(p8) In 2010, an NPP patient and family engagement convening meeting took place with the purpose to ‘‘build a shared knowledge base and identify specific action steps for NPP partners and others to consider that would have the greatest potential to address the 1st of 3 patient and family engagement goals identified in the 2008 report.’’29(p6) The key transformative drivers identified by this group of experts included (1) consumer engagement and knowledge dissemination; (2) public reporting and payment; (3) accreditation, certification, and professional development; (4) infrastructure supports; and (5) performance measurement. Specific to performance measurement, the group recommended the following specific actions: Maximize opportunities for multiple uses of data
collected at a single point in time.
Develop and expand use of electronic data col-
lection to support use of patient experience and engagement measures for quality improvement, accountability, and clinical decision support. Ensure collection of data that allow identification of disparities among different populations. Expand range of patient experience measures available, including both standardized surveys and tools for providing real-time, qualitative patient feedback. 29(p18) The National Strategy for Quality Improvement in Health Care, released in 2011 by the US Department of Health and Human Services,30 describes 3 broad aims of a national quality strategy: better care, healthy people/healthy communities, and affordable care. The report highlights as its 2nd priority to ensure that ‘‘each person or family are engaged as partners in their care.’’ 30(p1) It is critical for patients and their families to be actively involved in the decisions about their healthcare because it has been shown to increase desired clinical outcomes. The report recommends the specific goals related to person and PCC (Table 3).30(p24) Professional nurses are the largest group of health professionals in the United States. Engaging patients and families is an inherent activity of nursing encompassing ‘‘autonomous and collaborative care of individuals of all ages, families, groups and communities, sick or well and in all settings.’’ 31(p1) The main principle of PCC care is that patients should be the final arbiters in deciding what treatment and care they receive.5 ‘‘Person-centered care means defining success not just by the resolution of clinical syndromes, but also by whether patients achieve their desired outcomes.’’30(p10) The Future of Nursing: Leading Change, Advancing Health report emphasizes the ‘‘essential core of [a registered nurses’] nursing practice is to deliver holistic, patient-centered care that includes assessment and monitoring, administering a variety of
Table 3. Health and Human Services Goals for Person- and Family-Centered Care Person- and family-centered care
Goal Build a system that has the capacity to capture and act on patient-reported information, including preferences, desired outcomes, and experiences with healthcare. Opportunities for success Integrate patient feedback on preferences, functional outcomes, and experiences of care into all care settings and care delivery. Increase use of EHRs that capture the voice of the patient by integrating patient-generated data in EHRs. Routinely measure PE and self-management, shared decision making, and patient-reported outcomes. Illustrative measures Percentage of patients asked for feedback
Source: US Department of Health and Human Services.30 Abbreviation: EHR, electronic health record.
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treatments and medications, patient and family education, and serving as an interdisciplinary team.’’32(p39)
Conclusion Nursing has focused on PCC as a care delivery model for years and has led the healthcare team in empowering patients through education and culturally sensitive care programs and services. Patient-centered care is the foundation of the nurse-patient paradigm and forms the basis of care delivery strategies. Although professional nurses have been skillfully engaging patients for many years, new roles have emerged for nurses to ensure that patients are fully activating selfaccountability for their health based on the knowledge and skills acquired from nurses and other providers (eg, navigator role). Through the interpersonal aspects of professional nursing care, nurses are accountable for establishing relationships that support PE and PA, which ultimately lead to improved outcomes. Nurse leaders must ensure that nurses and other providers have the competencies necessary to ensure PCC.
Recommendations and Implications for Nursing Leaders To address the imperative of engaging patients and families in their care, it is critical that action be taken in the spheres of nursing practice, research, education, and policy.19 A conceptual definition of PCC must be formally adopted by the nursing profession that integrates nursing actions that engage the patient in care plans and processes ensuring that the patient can activate new knowledge and skills when at home. Nursing can take the lead in developing instruments that measure PCC, PE, and PA because most industry instruments measure similar or related concepts such
as nursing care quality or patient satisfaction as contrasted to a true PCC or PE measurement. Research also needs to focus on how PCC and PE affect patient, provider, and organizational outcomes. Because PCC requires a specific set of professional competencies, academic institutions and service organizations need to develop specific cultural and professional development strategies for ensuring that nurses and other providers are highly competent in the interpersonal skills necessary to ensure a PCC environment. Although PCC as a concept, framework of care, and a nursing or organizational philosophy has been a healthcare focus for several decades, there remains much work to be done to ensure that every patient receives PCC with each care encounter. Nursing can lead this effort to ensure that all patients are fully engaged in their care and can activate necessary resources and skills to care for themselves in a meaningful way. Nurse leaders must ensure that their organization’s philosophy and professional nursing model capture the conceptual definition of patient-centered nursing rather than leaving the interpretation of the concept to chance or individual definition. Accurate and precise tools to measure PCC must be developed instead of using proxy instruments such as patient experience surveys, which are essentially measuring a different concept. Because healthcare organizations are moving toward value-driven markets and systems of care, nurse leaders can influence other healthcare professionals to provide care that is patient centered with a fully informed and engaged patient and family unit with actions that promote patient accountability for their own health and wellbeing. Nurse leaders can influence the operationalization of true PCC within nursing by endorsing an interprofessional approach to care that is well coordinated and integrated across the system of care.
References 1. Leape L, Berwick D, Clancy C, et al.; Lucien Leape Institute at the National Patient Safety Foundation. Transforming healthcare: a safety imperative. Qual Saf Health Care. 2009;18(6): 424-428. 2. Mitchell PH. Patient-centered care: a new focus on a timehonored concept. Nurs Outlook. 2008;56(5):197-198. 3. Nursing Alliance for Quality Care, PMS. Environmental scan of performance measures: Care coordination and patient engagement. Washington, DC: Nursing Alliance for Quality Care, Performance Measures Subcommittee; 2011. 4. Polit DE, Beck CT. Nursing Research: Generating and Assessing Evidence for Nursing Practice. Philadelphia, PA: Lippincott Williams & Wilkins; 2008. 5. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001.
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6. Agency for Healthcare Research & Quality. National Healthcare Quality Report: Update. Fact Sheet, Rockville, MD: AHRQ; 2002. 7. Frampton SB, Gilpin L, Charmel PA. Putting Patients First. San Francisco, CA: Jossey-Bass; 2003. 8. National Research Corporation [NCR Picker]. Eight Dimensions of PCC. 2014. http://www.nationalresearch.com/products-andsolutions/patient-and-family-experience/eight-dimensions-ofpatient-centered-care/. Accessed May 13, 2014. 9. Davis KG, Schoenbaum SC, Audet AJ. A 2020 vision of patientcentered primary care. J Gen Intern Med. 2005;20(10):95357. 10. National Priorities Partnership. Nursing and the National Priorities Partnership: Aligning Efforts to Transform America’s Healthcare: One Vision, One Voice: Washington, DC: National Quality Forum; 2009. 11. Silow-Carroll ST, Alteras C, Stepnick L. Patient-Centered Care for Underserved Populations: Definition and Best Practices.
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A W.K. Kellogg Foundation Report. Washington, DC: Economic and Social Research Institute; 2006. Epstein RM, Street RL. Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering. Bethesda, MD: National Cancer Institute; 2007. Carver MC, Jessie AT. Patient-centered care in a medical home. Online J Issues Nurs. 2011;16(2). Manuscript 4. http://www .nursingworld.org/MainMenuCategories/ANAMarketplace/ ANAPeriodicals/OJIN/TableofContents/Vol-16-2011/No2May-2011/Patient-Centered-Care-in-a-Medical-Home.html. Accessed May 13, 2014. Mead N, Bower P. Patient-centeredness: a conceptual framework and review of the empirical literature. Soc Sci Med. 2000;51(7):1087-1110. McCance TB, McCormack B, Dewing J. An exploration of person-centeredness in practice. Online J Issues Nurs. 2011; 16(2). Manuscript 1. http://www.nursingworld.org/MainMenu Categories/ANAMarketplace/ANAPeriodicals/OJIN/ TableofContents/Vol-16-2011/No2-May-2011/PersonCentredness-in-Practice.html. Accessed May 13, 2014. Berwick DM. What patient-centered care should mean: confessions of an extremist. Health Affairs. 2009;28(4):w555-w565. Maurer M, Dardess P, Carman KL, Frazier K, Smeeding L. Guide to Patient and Family Engagement: Environmental Scan Report. Rockville, MD: Agency for Healthcare Research and Quality; 2012. Prepared by the American Institutes for Research under contract HHSA 290-200-600019. http:// www.ahrq.gov/research/findings/final-reports/ptfamilyscan/ index.html. Accessed May 13, 2014. Donabedian A. An Introduction to Quality Assurance in Health Care. New York, NY: Oxford University Press; 2003. Pelletier LR, Stichler JF. Patient engagement & activation: a health reform imperative and improvement opportunity for nursing: an action brief of the American Academy of Nursing’s expert panel on quality health care. Nurs Outlook. 2013;61(1):51-54. Institute for Patient-and-Family Centered Care. Clinicians. February 20, 2013. http://www.ipfcc.org/advance/clinician.html. Accessed May 13, 2014.
21. Quality and Safety in Nursing (QSEN). Competencies. 2003. http//qsen.org/competency. Cited February 20, 2013. Accessed May 13, 2014. 22. Dentzer S. Rx for the ‘blockbuster drug’ of patient engagement. Health Aff. 2013;32(2):202. 23. Piette JD, Weinberger M, McPhee SJ. The effect of automated calls with telephone nurse follow-up on patient-centered outcomes of diabetes care: a randomized, controlled trial. Med Care. 2000;38(2):218-230. 24. Sharp HealthCare. Five-Year Study Shows Better Outcomes Through Patient-Centered Care. September 9, 2011. http://www .sharp.com/coronado/five-year-study-shows-better-outcomesthrough-patient-centered-care.cfm. Accessed May 13, 2014. 25. Stewart M, Brown JB, Donner A, et al. The impact of patient-centered care on outcomes. J Fam Pract. 2000;49(9): 796-804. 26. Wolf DM, Lehman L, Quinlin R, Zullo T, Hoffman L. Effect of patient-centered care on patient satisfaction and quality of care. J Nurs Care Qual. 2008;23(4):316-321. 27. Bertakis KD, Azari R. Patient-centered care is associated with decreased health care utilization. J Am Board Fam Med. 2011;24(3):229-239. 28. National Priorities Partnership. National Priorities and Goals: Aligning Our Efforts to Transform America’s Healthcare. Washington, DC: National Quality Forum; 2008. 29. National Priorities Partnership. Patient & Family Engagement Convening Meeting Synthesis Report. Washington, DC: National Quality Forum; 2010. 30. US Department of Health and Human Services (USDHHS). National Strategy for Quality Improvement in Health Care. Washington, DC: USDHHS; 2011. 31. International Council of Nurses. Definition of nursing. 2010. http://www.icn.ch/about-icn/icn-definition-of-nursing/. May 13, 2014. Accessed May 13, 2014. 32. Institute of Medicine, The Future of Nursing: Leading Change, Advancing Health. Washington DC: National Academies Press; 2011.
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THE JOURNAL OF NURSING ADMINISTRATION
Patient-Centered Care and Engagement Nurse Leaders’ Imperative for Health Reform Luc R. Pelletier, MSN, APRN, PMHCNS-BC, FAAN Jaynelle F. Stichler, DNS, NEA-BC, FACHE, FAAN Although there is agreement about the importance of patient-centered care (PCC) to ensure optimal outcomes for patients, there is a lack of focused instruments to measure PCC. The aims of this article were to synthesize literature related to the concepts PCC and to provide concrete attributes, definitions, and a conceptual model for the concept of PCC Ask any clinical nurse or physician if he/she provides patient-centered care (PCC) and the answer will most likely be ‘‘yes’’. Although there is emphasis on PCC in nursing and among other healthcare professionals, ambiguity exists about the concept of PCC and how is it operationalized with the individual patient or at the unit and organizational level. Patient-centered care is emerging as a core value in support of evidencebased healthcare1 and is considered integral to the achievement of quality patient outcomes. Although there is agreement about the importance of PCC to ensure optimal outcomes for patients, there is a lack of focused instruments to measure PCC. Patient experience results are often used as a proxy for PCC. Perhaps, the scarcity of actual measures of PCC is because the definition, attributes, and competencies needed to ensure PCC have yet to be clearly accepted by nurses and
Author Affiliations: Administrative Liaison (Mr Pelletier), Sharp Mesa Vista Hospital, Core Adjunct Faculty, National University, San Diego, California; Professor Emerita (Dr Stichler), Nursing, San Diego State University, and Consultant, Research & Professional Development, Sharp Mary Birch Hospital for Women & Newborns and Sharp Memorial Hospital, San Diego, California. The authors have no conflicts of interest to disclose. Correspondence: Dr Stichler, PO Box 28278, San Diego, CA 92064 ([email protected]). Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.jonajournal.com). DOI: 10.1097/NNA.0000000000000102
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other providers. Patient-centered care has been characterized as meaningful interpersonal relationships between the patient and the provider(s) and honoring the whole person and family, respecting individual values, preferences and choices, and ensuring continuity of care with the goal of ensuring a positive patient experience.2,3 The aims of this article were to synthesize literature related to the concepts of PCC and provide concrete attributes, definitions, and a conceptual model for the concept of PCC because the concept and its application and evolution are quality priorities for nursing leaders.
Review of the Literature A review of the literature was conducted using the method described by Polit and Beck.4 Eight electronic databases were searched from 2000 to 2013 with the addition of references for relevant papers reviewed. The search was limited to papers published in English. The databases included ScienceDirect, Ovid, ProQuest, PubMED, CINAHL, PsychINFO, and Google Scholar. The following keywords and MeSH terms were used for the search: PCC, patient activation, and patient engagement. Articles were included if the focus was on the definitions or concept analysis of the key terms. Articles were excluded if the primary focus was on patient satisfaction or other terms or measurements that are used as a proxy to PCC. Of the 64 publications initially identified, 40 met the sample inclusion criteria. The 32 studies included 16 systematic reviews, 14 quantitative studies, and 4 qualitative studies. Other nonYevidence-based articles included books on patient care quality, organizational policy briefs, government bulletins, health policy briefs, organizational newsletters, and review articles focusing on PCC.
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Recognizing that patients who are involved in their own care have better outcomes, the Institute of Medicine (IOM), in Crossing the Quality Chasm,5 recommended that to improve quality healthcare systems, health systems need to develop patient centeredness by serving patients in a manner that is respectful of their individual preferences and values and ensures that patients are fully informed and involved in decisions and actions related to their plan of care. The IOM recommended that patient care must be less provider driven and more patient and family centered. Similarly, the Agency for Healthcare Research and Quality (AHRQ)6 in the National Health Quality Report identified 2 essential components of PCCVthe patient experience and patient partnerships. The AHRQ characterized the patient experience as communicating to and educating the patient in a meaningful way that informs the patient adequately, enabling the patient to engage in his/her own care through partnerships with the care providers. In PCC, nurses and other healthcare providers individualize the patient’s care according to the patient’s needs, values, and preferences. The founders of the Planetree initiative7 stated that PCC respects the patient’s perspective, prepares them to participate in their own care, and is the most effective approach to improve healthcare quality. These authors indicated that patients expect quality technical care as a basic element of quality care, but they also expect ‘‘respect, kindness, privacy, information, autonomy, choices and inclusion.’’7(pxxxiv) Various organizations have both defined and endorsed PCC, including the Picker Institute,8 the Commonwealth Fund in the Commonwealth Fund’s 2020 Vision of Patient-Centered Primary Care,9 and the National Priorities Partnership (NPP).10 Using the Picker Institute’s dimensions of PCC as a foundation, the Kellogg Foundation developed a definition of PCC for underserved populations outlining key institutional supports and processes that would be needed to ensure that PCC was endorsed as an organizational culture.11 Patient feedback and measures of PCC, workforce development, and leadership committed to patient centeredness were considered critical to the development of a PCC culture. Similarly, the National Cancer Institute (NCI) developed a model of PCC that includes the reciprocal relationship that is critical to improved communication between patients and providers to ensure health outcomes.12 Among all of these organizational definitions of PCC, there is a common theme of empowering the patient with information and involving and engaging the informed patient with the provider in planning and implementing a plan of care that meets the patient’s values and preferences. Most recently, in defining PCC from the accountable care organization perspective of a medical home
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model, the concept of PCC has focused more on the patient-as-person who shares power and responsibility for his/her care in the context of the patient’s perception of the illness as a unique experience influenced by the patient’s attitudes, knowledge, and personal meaning.13,14 The therapeutic relationship inherent in PCC also requires that providers be professionally and interpersonally competent with strong sense of self and personal values as a prerequisite or antecedent to achieving PCC.15 For PCC to be realized, ‘‘new health designs will involve some radical, unfamiliar, and disruptive shifts in control and power, out of those who give care and into the hands of those who receive it.’’16(pw555) Definitions of PCC described in the literature have many common attributes that describe the professional relationship with the patient, including respectful, supportive, therapeutic, caring, relationship based, enabling, empowerment, engagement, integrated, coordinated, collaborative, holistic, comforting, and knowledge expanding. The provider’s part in PCC is only 1 part of the equation, since the patient also plays a critical role ensuring the optimal outcomes expected as a result of PCC.
Patient-Centered Care Patient Engagement In more recent literature, the term PCC has recently become interchangeable with the term patient engagement (PE). With a goal of promoting patient and family engagement in hospitals, a Guide to Patient and Family Engagement17 was developed in collaboration with the AHRQ. The resulting definition highlights the importance of PE as a central focus of PCC. The report indicates that PE is the result of the individual characteristics, perspectives, and needs of patients, families, and providers; the organizational structures and processes that influence PE; and hospitalbased interventions that facilitate PE. Key strategies for engaging patients and specific interventions shown to facilitate PE and lead to positive outcomes are listed in Table 1. Collectively, these organizational definitions of PCC (see Document, Supplemental Digital Content 1, http://links.lww.com/JONA/A324) include similar attributes. By synthesizing definitions from the review of the literature (Table 2), common attributes of PCC can be 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
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Table 1. Key Strategies and Interventions to Increase PE Engage patients and families as part of the healthcare team Bedside rounds Bedside change of shift Patient/family-activated rapid response teams Specific efforts to increase family participation Access to medical records by patients and families Facilitating communication among patients, family members, and the care team Understanding which staff members are involved in the patient’s care Facilitating communication with physicians Using shared care plans/daily goal sheets Supporting increases in patient knowledge, skills, and abilities Engaging and supporting patients and families in transition planning Establishing systems for patients and family members to track medications and health records Accessing health information Involving patients and family members at the hospital level Establishing patient and family advisory councils Introducing other opportunities for patients and families to participate at the hospital level Eliciting patient and family member feedback Source: Maurer et al.17(pp44-52)
services, providers, and settings; (5) enabling with the education, information, and evidence necessary to engage patients in their own healthcare; and (6) activating and facilitating use of internal and external resources to manage their own care. A Conceptual Model for PCC and PE After the review of the relevant literature, common themes and components of PCC were identified and a conceptual model was developed using Donabedian’s structure, process, and outcome framework18 that illustrates the integration of PCC with PE and patient activation (PA) (Figure 1).19 At the core or center of the model are the empowered, engaged, and activated patient and family. Relationship-based care through a healthy work environment provides the context of care for providers and ensures an accessible, wellorganized, accountable supportive healthcare system for patients. Through partnerships and family-centered care, an activated patient emerges as actively involved in his/her healthcare, which leads to improved healthcare outcomes. Competencies Needed to Ensure PE Developing and implementing a patient-centered philosophy in healthcare require a sustained cultural change and commitment to viewing the patient as an engaged partner in care with a goal of activating his/her sense of self-management. Clearly, this philosophy calls for a specific set of complimentary values, beliefs, and
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competencies among providers. As health systems move from provider-centric models of care to a PCC model in which patients are the final decision makers in determining what treatment and care they receive,5 nurse leaders must ensure that nurses and other providers in their organizations demonstrate the competencies necessary to ensure PCC. Provider Competencies for PCC The NCI defined specific verbal and nonverbal providers’ behaviors to support PCC and identified 6 core functions of patient-centered communication between the provider and patient that lead to optimal health outcomes, including (1) responding to emotions, (2) exchanging information, (3) making decisions, (4) fostering healing relationships, (5) managing uncertainty, and (6) enabling patient self-management.12 Although not as explicit, other organizations such as the IOM, the Picker Group, the Institute of Patient-and FamilyCentered Care,20 AHRQ,6 NCI,12 and Quality and Safety in Nursing21 have also recommended professional competencies to ensure PCC. These organizations indicate that professionals must skillfully elicit patients’ values, beliefs, and preferences during the interview and assessment phases of the care process, respectfully communicate these values to other professionals on the interdisciplinary team, and integrate patients’ preferences into the plan of care. It is necessary for providers to advocate the patients’ access to care through referral systems and by integrating and coordinating care across multiple settings and providers. Providers must be effective educators and communicators with transparency about the patients’ condition and options available so that the patient can actively participate in decisions related to their care. The ability to develop a compassionate, therapeutic relationship with patients and engage them as partners in managing their care trajectory is critical because the future of healthcare will require patients to be fully informed and active in self-care management. Providers will also need to learn about various cultures and be sensitive to specific cultural influences on individual’s values and preferences as they educate and care for these patients.11 Nurse leaders must be committed to organizational culture changes that embrace PCC as the central focus of the service and the foundation for their care delivery processes and policies and ensure that the professional staff has the necessary competencies to deliver PCC. Patient Competencies for Engagement and Activation There is a dearth of literature about patients’ responsibilities and competencies to ensure patient-centered healthcare, but to support the implementation of PCC, patients must take an active role in their own care.22 To achieve PA, patients need access to understandable
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Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Institute for Patient-and-Family Centered Care20 NCI12
AHRQ Guide to Patient & Family Engagement17
Quality and Safety Education for Nursing33
An Exploration of Patient-Centeredness in Practice15
In the context of a medical homeIpersonalized care within a therapeutic relationship between the care provider and an engaged and informed patient
Patient-Centered Care in a Medical Home; Patient-Centeredness: A Conceptual Framework & Review of the Empirical Literature13,14
Isuperb access to high-quality, Ian approach to the planning, Ipatient-centered ‘‘a set of behaviors by patients, ‘‘Irecognize the patient Person-centered care isIa comprehensive care delivery, and evaluation of communication [is] eliciting family members, and health or designee as the standard of care that supported by information healthcare that recognizes and understanding the patient’s professionals and a set of source of control and places the patient in the systems, practice-based the importance of a perspective within his/her organizational policies and full partner in providing center of care delivery learning and quality patient-provider partnership own psychological and social procedures that foster both compassionate and processes that are based improvement. The care where providers acknowledge context, sharing power with the inclusion of patients and coordinated care based on the patient’s beliefs would be coordinated and the importance of emotional the patient by offering him/ family members as active on respect for the and values and engagement integrated across a team of and social support in her meaningful involvement members of the health care patient’s preferences, in shared decision making care providers with the healthcare, promote the in choices relating to his/her team and collaborative values, and needs’’ regarding his/her care. patient fully engaged in the well-being of individuals, health, and reaching a shared partnerships with providers and (p 123). PCC was described process and with routine and restore their dignity understanding of the provider organizationsI.the as being holistic and patient feedback to physicians and control patient’s problem and desired goals of patient and relationship-based with (providers). potential treatment or solution. family engagement include the provider having improving the quality and safety a sympathetic and of health care in a hospital therapeutic presence setting’’ (p 9).
NCR Picker and 2020 Vision of Patient-Centered Primary Care8,9
Table 2. Comparison of PCC Definitions
Figure 1. Patient-centered care model. Adapted from Patient/Family-centric Engagement Model.19
information (empowerment) and ‘‘will need to learn how to ‘negotiate’ with their providers in order to become true partners.’’12(p13) Some patients may elect to take a more passive role because of culture or individual knowledge, attitudes, and behaviors related to interactions with those they perceive to be in a hierarchical position with them. The intent of PCC, however, is to alleviate patient helplessness and facilitate PE and PA.
Outcomes of PCC Donabedian’s quality model of structure, process, and outcomes can also be applied to the enculturation of PCC.18 Organizations that espouse PCC as the focus of their care philosophy must create the structures, the mission, vision, and value statements and the policies, procedures, and care guidelines that support PCC. The patient care delivery methods, interdisciplinary collaboration, and patient-provider therapeutic relationships that lead to healing partnerships are the processes that create an enduring patient-centered culture. The implementation of PCC results in measurable outcomes for both patients and providers. Patient centeredness facilitates patients’ engagement in their own care, enables them with information for shared decision making, and activates their personal responsibility for mobilizing their resources for care and adherence to their collaboratively developed plan of
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care. Hospitals have experienced increased patient satisfaction levels and decreased costs and lengths of stay after implementing PCC philosophies such as Planetree.23,24 Other studies have demonstrated that a PCC approach to care in both inpatient and outpatient services has resulted in statistically significant changes in patients’ perceptions of finding common ground, improved emotional and physical health status, increased efficiency of care by reducing diagnostic tests and referrals, fewer symptoms of depression, greater self-efficacy to conduct self-care activities, and fewer ill days overall.23,25 Patients cared for in a PCC environment report greater satisfaction with the overall quality of the healthcare they received, including the technical quality of the services, their choice of providers, the continuity of care, and their communication with providers.23,26 A financial benefit has been reported from implementing PCC, with a significantly decreased annual number of visits for specialty care, less frequent hospitalizations, and fewer laboratory and diagnostic tests.27 Clearly, there is evidence to support the notion that PCC can result in positive patient, provider, and strategic organizational outcomes. PE Imperatives With Health Reform Several national imperatives have been disseminated regarding the future of healthcare and the role of the engaged consumer. The NPP, a collaborative effort of
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28 major national organizations that collectively represent every part of the healthcare system, identified a set of national priorities and goals to transform America’s healthcare system. Of the 6 priorities, the 1st was to ‘‘engage patient and families in managing their health and making decisions about their care.’’28(p7) The vision of the partnership was ‘‘We envision healthcare that honors each individual patient and family, offering voice, control, choice, skills in self-care, and total transparency, and that can and does adapt to individual and family circumstances, and to differing cultures, languages, and social backgrounds.’’28(p17) The NPP partners vowed to ensure the following: All patients will be asked for feedback on their
experience of care, which healthcare organizations and their staff will they use to improve care. All patients will have access to tools and support systems that enable them to effectively navigate and manage their care. All patients will have access to information and assistance that enables them to make informed decisions about their treatment options. 28(p8) In 2010, an NPP patient and family engagement convening meeting took place with the purpose to ‘‘build a shared knowledge base and identify specific action steps for NPP partners and others to consider that would have the greatest potential to address the 1st of 3 patient and family engagement goals identified in the 2008 report.’’29(p6) The key transformative drivers identified by this group of experts included (1) consumer engagement and knowledge dissemination; (2) public reporting and payment; (3) accreditation, certification, and professional development; (4) infrastructure supports; and (5) performance measurement. Specific to performance measurement, the group recommended the following specific actions: Maximize opportunities for multiple uses of data
collected at a single point in time.
Develop and expand use of electronic data col-
lection to support use of patient experience and engagement measures for quality improvement, accountability, and clinical decision support. Ensure collection of data that allow identification of disparities among different populations. Expand range of patient experience measures available, including both standardized surveys and tools for providing real-time, qualitative patient feedback. 29(p18) The National Strategy for Quality Improvement in Health Care, released in 2011 by the US Department of Health and Human Services,30 describes 3 broad aims of a national quality strategy: better care, healthy people/healthy communities, and affordable care. The report highlights as its 2nd priority to ensure that ‘‘each person or family are engaged as partners in their care.’’ 30(p1) It is critical for patients and their families to be actively involved in the decisions about their healthcare because it has been shown to increase desired clinical outcomes. The report recommends the specific goals related to person and PCC (Table 3).30(p24) Professional nurses are the largest group of health professionals in the United States. Engaging patients and families is an inherent activity of nursing encompassing ‘‘autonomous and collaborative care of individuals of all ages, families, groups and communities, sick or well and in all settings.’’ 31(p1) The main principle of PCC care is that patients should be the final arbiters in deciding what treatment and care they receive.5 ‘‘Person-centered care means defining success not just by the resolution of clinical syndromes, but also by whether patients achieve their desired outcomes.’’30(p10) The Future of Nursing: Leading Change, Advancing Health report emphasizes the ‘‘essential core of [a registered nurses’] nursing practice is to deliver holistic, patient-centered care that includes assessment and monitoring, administering a variety of
Table 3. Health and Human Services Goals for Person- and Family-Centered Care Person- and family-centered care
Goal Build a system that has the capacity to capture and act on patient-reported information, including preferences, desired outcomes, and experiences with healthcare. Opportunities for success Integrate patient feedback on preferences, functional outcomes, and experiences of care into all care settings and care delivery. Increase use of EHRs that capture the voice of the patient by integrating patient-generated data in EHRs. Routinely measure PE and self-management, shared decision making, and patient-reported outcomes. Illustrative measures Percentage of patients asked for feedback
Source: US Department of Health and Human Services.30 Abbreviation: EHR, electronic health record.
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treatments and medications, patient and family education, and serving as an interdisciplinary team.’’32(p39)
Conclusion Nursing has focused on PCC as a care delivery model for years and has led the healthcare team in empowering patients through education and culturally sensitive care programs and services. Patient-centered care is the foundation of the nurse-patient paradigm and forms the basis of care delivery strategies. Although professional nurses have been skillfully engaging patients for many years, new roles have emerged for nurses to ensure that patients are fully activating selfaccountability for their health based on the knowledge and skills acquired from nurses and other providers (eg, navigator role). Through the interpersonal aspects of professional nursing care, nurses are accountable for establishing relationships that support PE and PA, which ultimately lead to improved outcomes. Nurse leaders must ensure that nurses and other providers have the competencies necessary to ensure PCC.
Recommendations and Implications for Nursing Leaders To address the imperative of engaging patients and families in their care, it is critical that action be taken in the spheres of nursing practice, research, education, and policy.19 A conceptual definition of PCC must be formally adopted by the nursing profession that integrates nursing actions that engage the patient in care plans and processes ensuring that the patient can activate new knowledge and skills when at home. Nursing can take the lead in developing instruments that measure PCC, PE, and PA because most industry instruments measure similar or related concepts such
as nursing care quality or patient satisfaction as contrasted to a true PCC or PE measurement. Research also needs to focus on how PCC and PE affect patient, provider, and organizational outcomes. Because PCC requires a specific set of professional competencies, academic institutions and service organizations need to develop specific cultural and professional development strategies for ensuring that nurses and other providers are highly competent in the interpersonal skills necessary to ensure a PCC environment. Although PCC as a concept, framework of care, and a nursing or organizational philosophy has been a healthcare focus for several decades, there remains much work to be done to ensure that every patient receives PCC with each care encounter. Nursing can lead this effort to ensure that all patients are fully engaged in their care and can activate necessary resources and skills to care for themselves in a meaningful way. Nurse leaders must ensure that their organization’s philosophy and professional nursing model capture the conceptual definition of patient-centered nursing rather than leaving the interpretation of the concept to chance or individual definition. Accurate and precise tools to measure PCC must be developed instead of using proxy instruments such as patient experience surveys, which are essentially measuring a different concept. Because healthcare organizations are moving toward value-driven markets and systems of care, nurse leaders can influence other healthcare professionals to provide care that is patient centered with a fully informed and engaged patient and family unit with actions that promote patient accountability for their own health and wellbeing. Nurse leaders can influence the operationalization of true PCC within nursing by endorsing an interprofessional approach to care that is well coordinated and integrated across the system of care.
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