Authors: Shoshanna Sofaer, DrPH. Mary Jean …

[Pages:32]Authors: Shoshanna Sofaer, DrPH. Mary Jean Schumann, DNP, MBA, RN, CPNP, FAAN

This White Paper was prepared for the Nursing Alliance for Quality Care with grant support from the Agency for Healthcare Research and Quality (AHRQ)

to the George Washington University School of Nursing.

Approved March 15, 2013

FOREWORD

The Nursing Alliance for Quality Care (NAQC), composed of twenty-two national nursing organizations and consumer advocacy groups, is committed to improving the quality and safety of health care for all Americans. It believes that (1) the active engagement of patients, families and others is essential to improving quality and reducing medical errors and harm to patients; and that (2) nurses at all levels of education and across all health care settings must play a central role in fostering successful patient and family engagement. The following White Paper emerging from the national consensus process identified below describes how imperative it is for the nursing profession and NAQC to focus on patient engagement.

This document, initially drafted by a national expert on patient engagement, was honed through a national consensus process supported in part by grant 1R13 HS21600-01 from the Agency for Healthcare Research and Quality (AHRQ)*. This consensus process included:

1) A Panel of Experts which met to review the first draft and to dialogue about the content of the second draft. Experts were drawn from across the country representing the best thinking on patient engagement from a theoretical framework as well as from a consumer view, nursing view or other provider perspective. Nurses representing advanced practice, senior nursing leadership, education, research and regulation as well as nurses at the bedside spoke to multiple settings and populations in need of improved care and successful engagement. (See Appendix for attributions).

2) A national consensus conference that was planned and implemented, featuring national experts on patient engagement, to raise the level of knowledge about nursing's contributions to patient engagement. A central feature of this two-day conference was conducting listening sessions to elicit feedback from every attendee and expert speaker regarding the content of the White Paper, which was then incorporated into a third draft.

3) Reviews of all drafts with concomitant feedback by members of the Nursing Alliance for Quality Care, its Board of Directors, and the NAQC faculty and staff team.

4) Preparation and review of final drafts which were disseminated to the NAQC member organizations and the NAQC Board of Directors for approval and support.

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5) Wide dissemination of the final document within the national nursing community to enlist endorsement of its strategic plan and support for implementation.

6) Dissemination of the final document widely to other health care entities, health care professional disciplines, consumer groups and stakeholder groups to share strategies. While it will be critical to "divide the work" and thus "conquer," it will also be

important for those working on this very important initiative to be in regular and in-depth communication. Key shared messages will be needed. NAQC and others will need to track progress, not only within individual strategic areas, but across them. It is essential that the profession present a clear and united front in completing this transformational work.

The Nursing Alliance for Quality Care, representing both nurses and consumers, urges you to commit to this vision of the future, through active participation in advancing the profession's strategic agenda and action steps identified in the White Paper and ultimately by greatly enhancing nurses' contributions to fostering patient engagement successfully.

*Funding for this conference was made possible [in part] by grant 1R13 HS21600-01 from the Agency for

Healthcare Research and Quality (AHRQ). The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government.

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CONTENTS

FOREWORD. ................................................................................................................................ 2

I. INTRODUCTION & DEFINITION ................................................................................................. 5

II. NAQC GUIDING PRINCIPLES FOR PATIENT ENGAGEMENT . ....................................................... 6

III. WHY PATIENT ENGAGEMENT IS NURSING'S PRIORITY . ........................................................... 7

IV. WHAT IS PATIENT ENGAGEMENT? ......................................................................................... 9 A. Making the Case for this Definition of Patient Engagement. ..............................................................9

B. The Logic Model for Developing and Achieving Outcomes of Patient Engagement ..........................1 2

C. Acquiring Patient Engagement Behaviors and Shared Decision--making Skills ..................................1 3

IV. A MODEL FOR

ENHANCING THE CONTRIBUTIONS OF NURSES TO FOSTERING SUCCESSFUL ENGAGEMENT. .......................................................................................................................... 14

A. Achievement of Conditions by Nurses that will Foster Successful Engagement. ...............................1 4

B. Logic Model for Fostering Successful Engagement . ..........................................................................1 5

V. FROM MODEL TO ROADMAP:

BUILDING A STRATEGIC PLAN TO MAXIMIZE NURSING'S CONTRIBUTION TO PATIENT ENGAGEMENT . ............................................................................. 17

A. Ensuring that all nursing education emphasizes patient engagement. .............................................1 7 B. Amplifying the professional standing of nurses as champions for patient engagement ...................1 8 C. Strengthening support for nurses as advocates in the care environments of patients. .....................1 9 D. Aligning incentives to encourage patient engagement . ...................................................................2 0

E. Enforcing regulatory expectations and standards that support patient engagement principles in

practice. ..............................................................................................................................................2 1 F. Intensifying efforts to conduct and disseminate research on patient engagement . ..........................2 2

VI. CLOSING THE DEAL. .............................................................................................................. 23

REFERENCES. ............................................................................................................................. 25

ATTRIBUTIONS and ACKNOWLEDGEMENTS .............................................................................. 27

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I. INTRODUCTION & DEFINITION

"Patient engagement is the involvement in their own care by individuals (and others they designate to engage on their behalf), with the goal that they make

competent, well-informed decisions about their health and health care and take action to support those decisions."

Based on the discussion detailed in this White Paper, the NAQC proposed the above definition to facilitate discourse regarding nursing's role in fostering engagement and how to further advance the achievement of patient and family engagement in all health care settings.

Patient engagement is a key element and even a necessary condition for the achievement of patient-centered care (Gerteis, Edgman-Levitan, Daley and Delbanco, Eds., 1993; Institute of Medicine, 2001). In 2008, the National Priorities Partnership (NPP) of the National Quality Forum (NQF) identified patient-centered care that encompasses full engagement of patients and their families in shared decision-making processes as one of its six key priorities (National Priorities Partnership, 2008). NPP recommended its inclusion as a priority of the National Quality Strategy (NQS) (U.S. Department of Health and Human Services, 2011). The Center for Medicare & Medicaid Innovation (CMMI) has created a national Partnership for Patients (P4P) which places a strong emphasis on patient engagement and along with the NPP drives implementation of the priority. The American Academy of Nursing, as part of its efforts to identify the need to measure the impact of nursing, has published an Action Brief (Pelletier and Stickler, 2013) on measurement of patient engagement. Nurses' daily experiences include working with patients and families who have often fared poorly because patients' concerns, preferences and knowledge have not been valued.

The purposes of this paper are to propose a strategic plan that encourages nurses' support of patient engagement, to delineate the empirical case for the proposed strategic plan, and to secure the participation of organizations, nurses and stakeholders in implementation of the plan.

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II. NAQC GUIDING PRINCIPLES FOR PATIENT ENGAGEMENT

The NAQC, which includes both nursing and patient/consumer representatives, has

created a set of Guiding Principles to support nurses' efforts to foster patient engagement.

These principles provide a basis for the strategic plan and actions that NAQC

organizations and others will use to improve nursing's contributions to fostering effective

engagement of consumers across health care settings.

Guiding Principles for Patient Engagement

Patient engagement is a critical cornerstone of patient safety and quality. NAQC has grounded its approach to this topic by recognizing the primary importance of relationships between engaged patients and families and their clinicians, including but not limited to nurses. The following are principal assumptions that guide NAQC in addressing care that is patient-centered.

1. There must be an active partnership among patients, their families, and the providers of their healthcare.

2. Patients are the best and ultimate source of information about their health status and retain the right to make their own decisions about care.

3. In this relationship, there are shared responsibilities and accountabilities among the patient, the family, and clinicians that make it effective.

4. While embracing partnerships, clinicians must nevertheless respect the boundaries of privacy, competent decision making, and ethical behavior in all their encounters and transactions with patients and families. These boundaries protect recipients as well as providers of care. This relationship is grounded in confidentiality, where the patient defines the scope of the confidentiality.

5. This relationship is grounded in an appreciation of patient's rights and expands on the rights to include mutuality. Mutuality includes sharing of information, creation of consensus, and shared decision making.

6. Clinicians must recognize that the extent to which patients and family members are able to engage or choose to engage may vary greatly based on individual circumstances, cultural beliefs and other factors.

7. Advocacy for patients who are unable to participate fully is a fundamental nursing role. Patient advocacy is the demonstration of how all of the components of the relationship fit together.

8. Acknowledgment and appreciation of culturally, racially or ethnically diverse backgrounds is an essential part of the engagement process.

9. Health care literacy and linguistically appropriate interactions are essential for patient, family, and clinicians to understand the components of patient engagement. Providers must maintain awareness of the language needs and health care literacy level of the patient and family and respond accordingly.

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III. WHY PATIENT ENGAGEMENT IS NURSING'S PRIORITY

The current health care environment is complex, fragmented, overextended and

inconsistent in the quality of care it provides. Even in the face of significant innovations in

health care services and technology, the reality is that health care delivery, whether in

inpatient or primary care settings, is fraught with medical errors, safety concerns, and

failures to provide quality. While dramatic improvements in access to health coverage

through the Affordable Care Act are imminent, this will occur at a time when the system

unintentionally does harm to many it intends to cure. Such problems were documented by

the Institute of Medicine more than a decade ago. Despite national efforts by hundreds of

organizations and institutions, minimal progress has been made (Landrigan, 2010),

prompting recent national initiatives by the national Partnership for Patients to reduce harm

to patients by 40% and reduce all hospital readmissions by 20%, two agendas embraced

by the more than 5000 healthcare institutions and entities participating (US Department of

Health and Human Services, 2012).

So why does NAQC choose to focus on patient engagement as a priority? From

the perspectives of patients and family members, and from the views of health care

organizations and professionals, preventing harm and reducing readmissions both appear

doable through more complete and effective engagement of patients, regardless of setting.

Certainly patients and families cannot be expected to fix the health care system. But their

voices, their growth in making more knowledgeable well-informed health decisions, and

the certainty that they will have their values, preferences and choices heard can positively

impact a health care system willing to listen and learn. Nurses see all too frequently the

examples of medication errors where patients and families questioned the administration

of a medication to no avail, and the tragedies of families and patients who insisted to deaf

ears that something was seriously wrong, only to have the family member suffer grievous

consequences due to the failure of a health care team to respond appropriately. Patients

and families can and do speak up, but their voices have not proved to be sufficient to

protect themselves. It is up to health care professionals and health systems to listen and

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respond appropriately. Nurses are the professionals who are the eyes and ears of the health care system.

Nurses, as the most trusted of all professionals (Gallup, 2012) are considered by patients to be the safety net. Patients depend on their nurses to speak up within the system, to the physician and others on the team, by advocating that a "time out" occur to prevent a wrong site surgery, by coordinating care upon discharge (Jencks, Williams and Coleman, 2009), by insisting that the right medications be ordered or by taking the time to validate what the departing physician really meant when s/he ordered a procedure or delivered a diagnosis. Often patients are not given information on test/treatment benefits, risks and options that would make "patient consent" authentic. Health professionals' expressed concerns about this are reflected in the "Choosing Wisely" campaign of the American Board of Internal Medicine and its partners (Cassel and Quest, 2012). Nursing as a profession has an ethical obligation to support patients and families being successfully engaged and heard in every health transaction. Nurses at all levels, in all care settings and in their work and lives in communities, support engagement by all consumers of health care. There are 3 million nurses in the United States, on average one for every 100 individuals. Neighborhoods, faith-based communities, schools and others rely on their knowledge and often their volunteer services.

Nurses can be strong enough to question the appropriateness of a medication order that flies in the face of the patient's condition. Yet we know that a variety of factors have reduced nurses' willingness and effectiveness to be this strong voice on behalf of patients who depend on them. This document details a set of strategies that will support every nurse as an advocate, will educate each nurse regarding techniques that foster wellinformed decision-making by patients and families, and will demand that the health care system stop, listen, translate effectively, and respond appropriately to keep patients safe from harm due to medical error or insufficiently responsive health care professionals.

Engagement, including informed decision-making that is supported by strong nurse advocates, can and should be the rule rather than the exception in every health care

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