A Journey towards Patient-Centered Healthcare Quality: Patients, Families and Caregivers, Voices of Transformation

By Jean Moody-Williams

This book provides valuable insight into emerging trends in healthcare delivery; patient, family and caregiver engagement and the intersection of the two. It is unique in that it not only incorporates patient’s voice but provides context in the application of patients’ families and caregivers in healthcare transformation and the future of healthcare models. It is suited toward not only promoting empathy toward patients but also challenging the reader to learn and think about the future of healthcare and the value of patient’s voice in policy making and decisions about healthcare. It provides valuable information on quality improvement, consumer experience and emerging careers in this area with practical information and interventions.
Nurses and other members of the care team play a critical role in the evolving models of care and must stay abreast of emerging trend to ensure that patients’ needs are met while contributing to meeting the quality and economic goals of the organizations and care settings in which they work. This book will help to ensure that they remain abreast of changing trends in quality improvement, quality measurement, cost, health information technology and patient and family engagement so that they are in a position to lead their teams and organizations.
Direct accounts from patients, family and caregivers who want their “voices” heard are incorporated throughout the book.

• Language: English
• Publisher: Springer
• Release date: Oct 15, 2019
• ISBN: 9783030263119

Book preview

© Springer Nature Switzerland AG 2020

J. Moody-WilliamsA Journey towards Patient-Centered Healthcare Qualityhttps://doi.org/10.1007/978-3-030-26311-9_1

1. Understanding Patient and Family Engagement in Health Care

Jean Moody-Williams¹ 

(1)

Transitions, Trust and Triumph, Baltimore, MD, USA

Keywords

Patient engagementPatient-centered carePerson-centered careMapping the patient’s journeyFamily-centered roundingNurse bedside shift report

1.1 Defining Patient and Family Engagement

Recognizing the need for prevention and health care starts at birth and is usually handled by a parent or guardian. The responsible parties learn what is required to care for their child through reading, information from their clinicians, social media, and friends and family. As the child grows, they continue to get well-child visits, follow guidelines regarding immunizations and screenings, and follow requirements of schools, sports teams, camps, or other established requirements. For the most part, the child has little to decide in the care they receive given that guidelines are relatively straightforward, and parents choose whether to follow them or not. The child may develop some negative associations with seeking health care because well-child visits may be accompanied by injections and sick visits with what appears to be poking and prodding. As the child matures to college age or working age, they are likely to be healthy and may seek little medical attention. At this stage, much of the information regarding health comes from television, social media, trainers at the gym, or other sources. The information may center around staying healthy, eating the right foods, avoiding smoking, exercise, and other factors that contribute to one’s well-being.

For many, the first time they must decide about health care may be the birth of their own child or caring for a parent or other loved ones. Very little prepares an adult to make healthcare decisions or to even inform them of their role in the healthcare decision-making process. Healthcare professionals may make various assumptions about what the person is bringing to the healthcare experience. There may be an assumption that the person knows very little about health care and will not be able to contribute to decision-making or there could be an assumption that they know quite a bit about health care and need little explanation to make a decision. There could be the assumption that the person wants someone else to make the decisions for them. There may be a feeling that the questions that they have are annoying or that they are a nuisance.

Given the range of possibilities that a person may bring to the healthcare experience, the only assumption that is safe to make is that healthcare professionals must talk to, listen to, and engage with the person that is seeking health care in order to find out their thoughts, values, knowledge, life situations, preferences, and goals. While nurses and other clinicians have always observed the foundational principle of talking to patients to build a plan of care, patient engagement in the era of healthcare transformation takes on a new meaning and level of importance. Patient and family engagement should not be limited to the nursing staff. All members of the healthcare team have a role to play to ensure coordinated care and improved outcomes.

The role of the nurse in patient and family engagement is engrained in the theory of nursing care and nursing diagnosis which combines clinical information, scientific evidence, social and psychological factors, and other areas to provide patient-centered care. The nursing process and standard language to describe the nursing diagnosis are outlined in great detail by the American Nurses Association and NANDA international.

While much progress has been made to engage patients in their care and provide the kind of information needed to introduce choice and competition into health care, there is still a great deal of work to be done.

Patient and family engagement is a term used in health care today with many definitions depending on the organization and context. Following are a few of the descriptions and ideas about patient and family engagement:

Centers for Medicare & Medicaid Services (CMS)—Patients and families are partners and are critical in defining, designing, participating in, and assessing the care practices and systems that serve them to assure that they are respectful of and responsive to individual patient preferences, needs, and values. This collaborative engagement allows patient values to guide all clinical decisions and drives positive transformation in attitudes, behavior, and practice (Centers for Medicare and Medicaid 2016).

Agency for Healthcare Research and Quality (AHRQ)—Patient and family engagement creates an environment where patients, families, clinicians, and hospital staff all work together as partners to improve the quality and safety of care. Patient and family engagement encompasses behaviors by patients, family members, clinicians, and staff as well as organizational policies and procedures that support these behaviors (Agency for Healthcare Research and Quality 2017a). Research shows that when patients are engaged in their health care, it can lead to measurable improvements in safety and quality. Patient and family engagement improves many aspects of hospital performance, including quality, safety, financial performance, patient experiences of care, patient outcomes, employee satisfaction, and improved nursing time management.

Institute for Medicine—Health providers should place a higher premium on fully involving patients in their health care to the extent that patients choose. Clinicians should employ high-quality, reliable tools and skills for sharing decision-making with patients, tailored to clinical needs, patient goals, social circumstances, and degree of control that patients prefer. Healthcare delivery organizations should monitor and assess patients’ perspectives and use those insights to improve care; establish patient portals to facilitate data sharing among clinicians, patients, and families; and make high-quality tools available for shared decision-making with patients (Institute of Medicine 2013).

There is frequent debate on terminologies such as patient, person, people, family, participant, caregiver, or other terms. There is also a debate among terms such as provider, clinician, facility, and physician. These terms are used interchangeably throughout the text to highlight the importance of the role rather than the title. The bottom line is that a person-centered approach recognizes that life is a continuum in which people take on different roles at different stages, sometimes as patients, sometimes as the caregiver, sometimes as an advocate of prevention, and many other roles. Whatever the current stage, the person’s thoughts, values, and decisions are of importance.

1.2 Understanding the Patient Journey

While standardized surveys have been used for many years to gather information on the patient’s experience during the delivery of health care, the industry is also beginning to use a variety of additional techniques and tools to understand the patient journey. One such tool is the use of human-centered design (HCD) to understand the journey and build a system that reduces the barriers and obstacles to receiving necessary care.

Very generally, HCD is an iterative design approach by which observations are made and data is collected on a person or persons engaging with a system or process to develop or improve products, services, and experiences with the needs of the person at the center of it all. During the observation and data collection phase, challenges are observed and recorded throughout the journey to explore ways to remove the barriers or improve the process. Once a change is made, it must be studied again to ensure that it addresses the identified issues, and if not make additional changes.

One example of this is the efforts underway at the Centers for Medicare & Medicaid Services (CMS), which is the agency in the USA responsible for providing healthcare insurance for millions of Medicare beneficiaries. Through an initiative called Patients Over Paperwork, they met with many beneficiaries and caregivers in their care settings, at their homes, and at State Health Insurance Program offices to understand healthcare services and transitions between settings (Centers for Medicare and Medicaid Services 2018).

What CMS Learned:

People seek personalized and seamless transitions between care settings and providers. Many times, beneficiaries and their caregivers are bogged down by the complexity of managing health records, receiving fragmented or ad hoc treatment, and receiving guidance to act on care plans that are difficult to implement.

People feel that the standardized system does not serve their needs and that health insurance coverage is confusing. They want a system that is customer focused, streamlined in delivery, and less restrictive in choice.

People often feel ignored by their providers and excluded from decision-making.

Beneficiaries and their caregivers need a system that gives support and compassion for their experiences, especially when faced with high stress or time-sensitive decisions.

It is not enough to collect information, but you must also act on what you have learned. CMS has been working to address the burdens that they discovered. For example, they are focusing on empowering patients and providing them with the tools needed to make better informed healthcare decisions. Many of the burdens were addressed through new regulations, developing new tools to provide information, and exploring patient navigation programs.

Many others are working on the patient journey. For example, the Veterans Administration (VA) uses HCD as one of the approaches that will help them transform their healthcare system to serve veterans best. HCD serves as a foundational approach in which veterans’ needs are the main focus during all stages in the development of products, services, and processes. They examine current programs to see if they were created with the veteran experience in mind. They will use HCD to improve their processes so that veterans interact with the VA in ways that are best suited to fulfill their needs and wants. When designing their programs, they consider the following factors (Veterans Affairs Center for Innovation 2015):

Desirability: Does the solution serve the needs of veterans? Does it improve the experience for veterans?

Feasibility: Can the solution be executed? What assets and capabilities must we improve or create to build it? Who else should we partner with?

Viability: Will the solution have a significant, positive impact on VA? How does it align with the VA goals and aspirations?

For example, HCD was used to address the challenge of veteran’s confusion over how to provide feedback to the VA on their healthcare experience. The VA had multiple feedback systems in place, adding to the confusion. It was also challenging to get feedback to the right persons in a timely manner. To address this issue, they established a goal of creating a tool to route veterans’ input to the right employees so they can respond quickly and effectively.

The VA reported that they used HCD to map key journeys through service lines from a veteran’s perspective and identified the moments that matter most to veterans. They conducted interview sessions to gather veterans’ and employees’ reactions to initial designs of the feedback tool and made improvements based on these reactions. As a result of these efforts, a user-friendly digital tool was designed to address veterans’ most pressing needs and the issues they encounter when interacting with VA. The tool can be accessed through a website link using a computer, tablet, or a smartphone—either directly after their encounter with VA or on their own time. They note that a back-end routing structure was created to address both veteran and employee needs by bringing feedback directly to the appropriate party. HCD has many other uses yet to be fully explored, such as the need for more efforts to determine how medical devices and technology design impact a patient’s experience. Often the design is done with the clinician in mind as the end user verses the patient as the one that is going through the experience.

There are many tools available to assist clinicians in understanding and implementing patient and family caregiver engagement concepts within their daily work and within their organizational policies. The most important thing to remember in patient and family engagement is to listen to the voices of patients and families.

Voices from Patients, Families, Caregivers, and Clinicians: Carolyn’s Story

I served for many years as a pediatric nurse with a desire to be a nurse starting even as a child reading many books on the fictional nurse character known as Cherry Ames. Many people were influential in my career path. I was fortunate to enter nursing at a time when primary nursing was the care delivery model. Each patient was assigned to a primary nurse and a secondary nurse. As the name implies, the primary nurse was assigned to the same patients whenever he/she was on duty. The secondary nurse was assigned to the patient when the primary nurse was off duty. It was the primary nurses’ duty to develop, implement, and evaluate the patient’s plan of care, communicate with other members of the healthcare team and the