III: Conclusions: Nursing Research—Framing the Future
Expanding Health Care Policy: The Ties That Bind
Ada Sue Hinshaw and Patricia A. Grady
This book explores the process of using nursing research to shape health policy. There is no single best approach to accomplish this, but there are a number of ties that bind research to health policy. Some of these are actual, some are implied, and others have the potential to be realized in the future. This text focuses on all three of these in the overview, the contexts that are provided, and the examples that are given. In this chapter, several areas are highlighted: the concepts used by the researchers, innovative clinical patterns that have emerged, lessons learned from the illustrative examples provided in the chapters, and finally the policy directives shaped by the examples provided.
INNOVATIVE CLINICAL PATTERNS
The first section of this text deals with innovative clinical patterns that are influencing nursing science and health policy, including expanding areas of clinical and basic science, team science, data science, and implementation science.
Expanding Areas of Clinical and Basic Science
Over time, there has been a shift in the type of research nurse scientists are engaging in, although the focus remains primarily clinical. As pointed out by Cashion and Austin, nurses are incorporating more biological measures and themes into their research. With the expansion of genetics into genomics and the surge of other areas of “omics,” additional knowledge is required to conduct cutting-edge research that will improve patient care. Symptom science, the core of nursing, has evolved over time. Still focusing on the patient, it now incorporates the explosion of new information, adapting it in ways that support the nursing research agenda. A good example of this approach is the National Institutes of Health Symptom Science Model (NIH-SSM; Cashion & Grady, 2015). This model integrates biological, psychological, and sociological components. It identifies a symptom, develops the related phenotype, and uses omics methodologies to identify biomarkers that will lead to development of clinical interventions for individuals. A good example of the clinical and basic science interface, examined by Williams in Chapter 4, is the work of Starkweather et al. (2016) in phenotyping and management of low back pain. This study was designed in a manner that would facilitate translation into policy.
This confluence of clinical and basic science that is emerging is particularly relevant to nursing science, as nurses have a strong clinical focus and are better able to recognize appropriate opportunities and tie them to the basic science knowledge in ways that may be more challenging for other disciplines.
Team science, once considered a new idea, is now becoming essential as the level of complexity of science continues to grow. There are numerous examples of team science in the chapters contained in this book. Naylor, in Chapter 5, makes the point that team science is necessary because the concept of health itself is very complex. She identifies key points related to team science in the area of health that are necessary for successful knowledge development and translation. She characterizes the successes of the Transitional Care Model (TCM) developed and implemented by her team, and describes activity based on that success. Her chapter also identifies the important contributions that nurses make to interdisciplinary teams: nurses contribute unique knowledge and skills to share with other disciplines, and their collaboration with other disciplines is essential for safe and effective health care; nurse leadership of interdisciplinary teams is associated with improved safety and higher quality outcomes; and nurse team leadership is associated with greater team interdependence, fosters greater respect among members, and positively contributes to organizational culture of interprofessional learning.
Interdisciplinary team approaches are key in most of the examples contained in this text. Team science is most often understood in terms of clinical studies, but due to the growing complexity of science, it is increasingly seen in the basic sciences as well. Dorsey’s work is a good example to illustrate this. Although her work is framed in the clinical health problem of neuropathic pain, she is currently carrying out primarily basic science studies. Within that context, to help her carry out those studies, she has created an interdisciplinary team of experts that include geneticists, clinicians, pain experts, and neuroscientists, to name a few.
The expertise of members who constitute an effective team can cover a broad span, as demonstrated by the chapters in this book. Increasingly, patients and community members are becoming a formal part of teams. Hill has shown the important role of the community in achieving successful outcomes working with African American males with hypertension; Hickman, using the Physician Orders for Life-Sustaining Treatment (POLST) tool, has formally incorporated the patient in ways that are essential in facilitating the achievement of their health care preferences toward the end of life; Hinds has developed strategies to include families in a more practical and essential way to improve outcomes for their dying children. Her approach has positive outcomes that span the period of bereavement of surviving parents.
Szanton’s work with homebound older adults helps to redefine the potential range of expertise that can constitute a successful team, including handymen, social workers, and occupational therapists. Hickman’s team has included the clergy, lawyers, and legislators in order to create and implement the POLST method of incorporating patient care wishes. Rantz has included engineers, architects, university administrators, and city planners on the team she created to develop TigerPlace, Missouri’s first Aging in Place site.
The area of data science is considered one of the most rapidly expanding areas of science. Clinical nurses and nurse scientists have long been generating enormous amounts of data, through patient histories, health records, and observations. The challenge moving forward is how to collect such large amounts of data in meaningful ways and how best to store, analyze, and share it so that the most can be extracted from all the information that is collected. This is also an area primed for and in need of health policy formation, given the issues related to privacy, data sharing, and resource allocation and utilization. The National Consortium on Data Science has released a relevant white paper covering these issues (Ahalt et al., 2014); the NIH has formulated a Big Data to Knowledge (BD2K) Initiative, which will provide an NIH Data Commons and a toolkit for research (NIH, 2016); and the International Committee of Journal Editors (ICJME) has developed a framework for data sharing to be used by journals (Warren, 2016). It is important that nursing engages in these discussions in order to capture opportunities and to make the significant contributions for which it has the potential.
Bakken makes a very compelling case for the importance of, advantages of, and the necessity of becoming familiar with these new data science approaches, either singly or, more aptly, as part of a team in order to capitalize on the opportunities emerging. She stresses the importance of getting the major nursing organizations involved and helping to underscore the importance of emerging opportunities.
The importance of implementation of science is underscored by Titler and Shuman in Chapter 3. Despite additional resources developed over the past few decades to help in translating research to policy making and decision making, limited progress has been made. She also points out that despite the availability of evidence-based recommendations for health policy and practice, evidence-based care is delivered only about 70% of the time, according to a 2014 National Healthcare Quality and Disparities Report (Agency for Healthcare Research and Quality [AHRQ], 2015). Implementation can be facilitated when tied to national programs such as the Centers for Medicare and Medicaid Services (CMS) value-based programs, which reward systems with incentive payments for quality of care; or credentialing bodies such as the Joint Commission for Accreditation of Healthcare Organizations (The Joint Commission), which sets standards of care for accreditation. Titler and Shuman also give examples of how local and state governments can facilitate progress in areas such as childhood obesity by implementing sound nutritional policies for school lunch programs. Barriers to implementation are identified and strategies to overcome them are elucidated as well. Titler underscores the facts that it is difficult to change attitudes and that change does not happen quickly, even in the face of new knowledge. Relationship building and trust are required to get individuals or groups to endorse change, and that trust must be maintained in order for change to be sustained.
FACTORS THAT INFLUENCE CLINICAL PATTERNS AND PROVIDE TIES THAT BIND RESEARCH
In progressing forward, changes are made over a range of parameters. Important factors that influence clinical patterns and provide ties to bind research to policy include: identified gaps, timing, changes in technology, health disparities, new knowledge and emerging scientific areas, and adaptation of existing models and tools. A number of innovative clinical patterns, as developed and described by senior researchers, are highlighted within the chapters of this text.
The first of these, identifying gaps, is an important factor in setting the stage for change. The absence of satisfactory health care options for our older populations is noted by both Rantz and Szanton in Chapters 12 and 13. Each has addressed the issues, while keeping the patient central to the equation. Szanton focused her work on enabling individuals to remain in their homes through adaptation of those environments. Unique to her approach was the idea of creating innovative, nurse-led teams that could help to modify the environment. She included a handyman as well as others who could help to bring a more external environment to modify the one in which her patients were living. Examples included occupational therapists and social workers. Rantz developed a creative approach to extended care at TigerPlace, a facilitated living environment for those who were not able to remain at home. This approach involved the use of wearable and environmentally placed sensors that could serve as activity monitors. Thus, those living at TigerPlace could safely and freely move around, with the sensors noting and reporting any changes in activity patterns that might indicate a need for assistance.
Several examples illustrate the importance of timing. Innovative clinical approaches are often required in order to make change, and those changes often lead to changes in policy. However, change can be greatly facilitated or impeded by timing. Readiness of the health care system, health team members, our communities, and legislative groups are all examples of how timing can play a role. Some innovations described were created to make more immediate changes, such as the examples of Rantz, and Szanton, in responding to changing demographic imperatives; or Grey, in her work, addressing the near-epidemic increase of diabetes in teenagers. Other examples set the stage for change, such as the work of Cashion, Williams, and Dorsey in the area of genomics and Finkelstein in the use of technology. It is worth noting that gaps and timing are often closely tied together.
Changes in technology also influence clinical patterns. The ability to use emerging technologies to better deliver care, monitor health or response to therapy, or provide improved access are all potential advantages. As the population ages, but still remains relatively active, new ways of maintaining health become important. Finkelstein and his colleagues have pioneered the use of technology in their telehealth studies as a way of meeting these new and emerging needs for more accessible ways to obtain care and maintain good health. This is a creative way to approach the changing health care landscape and has the added advantage of increasing access to health care for many populations, both rural and urban.
Health disparities continue to plague society. An added advantage of approaches using emerging technologies is that they may help to address the health disparities currently present in our society, by reaching hard-to-reach populations. Other creative clinical approaches highlighted that address health disparities include those of Moser and her team in addressing the needs of rural populations with cardiovascular issues, and the pioneering work of Martha Hill and her team in addressing health disparities in inner-city populations using community-based approaches.
New knowledge in emerging scientific areas is another important tie. One of the unique aspects of nursing research is that nurses engage in both basic and clinical research and thus have a collective expertise with a wide span of influence. This is a particular advantage for using nursing research to shape health policy. Emerging scientific areas addressed in this text include genetics, end-of-life and palliative care, and caregiving for the aging population. The latter two areas, although they have not just emerged, are emerging in new ways and with additional urgency due to the increased numbers and new care circumstances.
An interesting example of the confluence of basic science and clinical expertise is in the area of genomics. The NIH Symptom Science Model, described by Cashion and Austin in Chapter 2, demonstrates this dynamic and provides a unique approach to collect data in a comprehensive fashion, providing the ability to synergize both basic and clinical knowledge acquired.
In terms of clinical models, the approach of addressing symptoms rather than disease has long been a hallmark of nursing and nursing research. Heitkemper’s program of research on the symptoms of gastrointestinal distress is a good example. This approach can be a powerful tool in the health policy arena, as it is symptoms that typically get the attention of patients and the general public. Addressing symptoms can be an important catalyst for change related to issues surrounding chronic illness and in circumstances in which self-management is an important driver.
Within the emerging area of end-of-life and palliative care, there are several good examples in this text. The research of Hinds with children experiencing life-limiting illnesses, and their families, is breaking new ground. Her programs are producing an evidence base for clinical care and informing the national conversation at a time when policies are being developed in this important area of health. Hinds’s work is novel in the extent to which she is incorporating the family as integral members of the team for children with life-limiting illness. This is a good example of being at the beginning of policy formation or even slightly ahead of the curve, although it is not ahead of national need.
Creative clinical approaches are often developed out of necessity, just as policy is often developed for the same reason. This necessity is usually preceded by changing demographics or circumstances. Gitlin describes this well when she talks about the need for improved models to address caregiver needs. Because the changing demographics of age and medical advances led to shorter hospital stays, caregiving shifted from hospitals and medical centers to home or residences for older adults. Historically, health care systems have been based on acute care paradigms, and the changing structure of families, decreased number of caregivers available, and increased women in the workforce have created a need for patterns of caregiving that differ from the previous norm. Her studies address this need in new and creative ways, and form the basis for policy change.
The forces shaping Gitlin’s work differ markedly from those prevailing at the time Riegel began to develop her self-care model in the 1990s, and serve as an interesting example of change over time. Early in her career, Riegel noticed that patients appeared to improve in the hospital, but experienced frequent readmissions following discharge. Her observations and determination to do something to change the situation were met with resistance and what she refers to as a “fill the beds mindset.” However, her research showed positive outcomes and led to her development and the acceptance of the self-care model used today.
Clinical innovation through adaptation of existing models