In this editorial, our first ANC Editor-in-Chief, Dr Madge Buus-Frank, provides a thoughtful look back at the past 20 years of neonatal care and our journal. We hope you will learn from our past and look to our future through her thoughtful words.
Debra Brandon, PhD, RN, CCNS, FAAN
Co-Editor; Advances in Neonatal Care
Jacqueline M. McGrath, PhD, RN, FNAP, FAAN
Co-Editor; Advances in Neonatal Care
Advances in Neonatal Care:20 Years, 1445 Manuscripts, and Countless Nurses Touched and Infants Impacted!
As the Founding Editor-in-Chief of Advances in Neonatal Care (ANC), I am honored to be invited by Drs Debra Brandon and Jacqueline McGrath to write the first in a series of guest editorials celebrating the 20-year anniversary of the journal's launch. Many of you may not know that this journal was “conceived” during the Presidency of our visionary leader Dr Carole Kenner, and we gave “birth” during the term of the National Association of Neonatal Nurses (NANN) President Dr Frances Strodtbeck. We were given 9 short months to ensure that NANN members achieved the benefits of full business ownership of their professional journal and that they would continue to have access to the best-quality evidence required to serve our patients with increasingly complex healthcare needs.
The 2001 inaugural editorial1 reflected on the exponential growth of knowledge in healthcare and the very real risk of obsolescence for nurses who were not actively engaged in a community of practice (CoP) that fosters robust lifelong learning.2 Our hope was to create this CoP for neonatal nursing led by our professional society NANN and facilitated by a publication that would “live, breath, and invigorate nursing practice with the knowledge needed to survive and thrive in the decades to come.”
Twenty years later the idea of CoPs distributed knowledge and lifelong learning are even more critical. In the 1950s, the “doubling of medical knowledge” took 50 years, by 1980 knowledge doubled in 7 years, by 2010 the doubling had accelerated to 3.5 years and in 2020 the doubling of knowledge is expected to occur every 73 days.3 The threat of obsolescence is omnipresent as the pace of knowledge expands at an unprecedented pace and begs the original question posed in my first editorial, “How will nurses practice, learn, and innovate in order to create our preferred future?”
MISSION, VISION, AND VALUES
With these ideas in the forefront of our planning, the journal's stated mission was “to advance the art and science of newborn care through the publication of scientifically sound and clinically relevant articles that would enhance interdisciplinary care.”1 The talented Editorial Board, for which we should all be grateful, knew that member engagement in the design and delivery of this publication was the key ingredient to help ANC move from being “just another journal collecting dust on a lonely library shelf to a transformational learning tool.” Our stated goals were to broaden your knowledge base, enhance critical thinking, infuse a healthy dose of evidence, and challenge your thinking.1
The journal was and remains quite novel in its approach by incorporating video content, evidence-based reviews, and research tutorials to build capacity in the CoP. From the outset, we embraced rigorous publication and conflict-of-interest standards from the International Committee of Medical Journal Editors, emphasizing editorial independence and avoiding undue commercial influence.4
Unlike many nursing journals of the time, we chose to elevate the quality and rigor of the journal by adopting the Consolidated Standards for Reporting Trials (Consort Statement),5 and the Standards for Quality Improvement Reporting Excellence (SQUIRE statement).6Advances in Neonatal Care was quickly recognized by Index Medicus, a lofty achievement for a 2-year-old nursing journal. This ensured that ANC content would be indexed in PubMed and retrievable to clinicians and scholars around the world.
The standards of the journal were embraced and further elevated7 by the visionary Editors who followed my tenure and who incorporated nationally recognized standards for case reports (CARE),8 evidence-based practice educational interventions (GREET),9 and papers categorized as review of the literature or meta-analysis that are guided by the Preferred Reporting Guidelines for Systematic Reviews and Meta-Analysis (PRISMA) standards.10
In 2020, the journal continues to elevate practice for the entire neonatal care community demonstrating a consistently rising Impact Factor (1.244 in 2018). The vision of impacting neonatal care worldwide has evolved from an aspirational goal to a reality given that ANC now:
- Circulates in 55 countries;
- Is readily accessed via Ovid with 140,607 views per year;
- Drives robust Web site traffic and online presence with a record 283,089 page views and 423,696 exposures per year; and
- Has published 1445 manuscripts from 2001 to 2020.
The Co-Editors and their committed Editorial Board continue the tradition of mentoring novice authors despite the fact that they now receive 180 to 200 manuscript submissions per year.11
Anniversaries provide us with both the impetus and the rare opportunity to pause and reflect on the incredible advances that have transpired since the launch of the journal just 20 short years ago. In the words of William Pollard,
“Learning and innovation go hand in hand. The arrogance of success is to think that what you did yesterday will be sufficient for tomorrow.”
Given this, I take the editorialists prerogative, highlighting key lessons from the past 20 years that may help us chart our course in 2020 and beyond.
LESSON 1: IMPROVING NEONATAL OUTCOMES IS CLEARLY POSSIBLE
In 2001 ANC was launched as neonatal care came of age in the post–surfactant “bubble.” Unfortunately, after the introduction of surfactant improvements in mortality plateaued.12 We were increasingly aware of developmental stressors of the newborn intensive care units (NICU) environment and the mismatch between this environment and the needs of more fetal infants.13,14 During that time we also grappled with the wide variation in neonatal outcomes among and between NICUs and the high costs associated with NICU care.15,16 Caregivers, burdened by the harsh reality of the difficult ethical decisions NICU families face as we “saved” increasing numbers of infants on the border of viability, were influenced by a landmark cinéma vérité film, called Dreams and Dilemmas, produced by Dr George Little from Dartmouth.17
Our Canadian colleagues published important articles focused on key morbidities (chronic lung disease, late-onset infection, necrotizing enterocolitis [NEC], intraventricular hemorrhage, and retinopathy of prematurity) and the toll these conditions placed on NICU graduates and their families,18 their quality of life,19 and their use of health services.20 This work amplified the need for more robust follow-up data and clearly demonstrated that families and siblings were impacted up to 20 years after discharge.21,22
Knowing the long-term impact of our care highlighted the need to further improve infant and family outcomes. One result of this knowledge was a collective focus by the neonatal community on implementation science; that is, implementing practices that we know make a difference and focusing on measurable improvements using quality improvement methods.23
Our collective progress was reported in a landmark JAMA Pediatrics article using data from 756 US NICUs.24 These data suggest that in the United States from 2005 to 2014, rates of death prior to discharge and serious lifetime morbidities decreased significantly. Within those 8 years 75% of NICUs achieved performance rates equivalent to the 2005 “best quartile benchmarks” for all outcomes except chronic lung disease. This observational study revealed the magnitude and remarkable pace of improvement in neonatal care using robust risk-adjusted clinical outcomes; however, it was not designed to explain how and why such improvements were achieved.
During this same time period many neonatal teams, often fueled by the work of diligent nurses, were engaged in local, state, and national quality improvement efforts. These efforts sometimes revisited the basics of infection prevention (ie, an emphasis on handwashing)25 and promoted uptake of evidence-based practice. Nurses built and often led central line teams and tested and refined standardized line placement and maintenance bundles to ensure high-reliability care.26–28 Probably, one of the most important developments was a culture shift away from the mind-set that “every infant gets infected” to one of zero or near-zero tolerance for these preventable hospital-acquired infections.29
Teams across the United States focused on reducing retinopathy of prematurity and safe use of oxygen, by optimizing saturation targets, increasing awareness at the bedside, and minimizing alarm fatigue both in individual and multicenter quality improvement interventions.30–32
An increasing emphasis on nutrition became more prominent on the neonatal research agenda. The evolving evidence helped us move away from prolonged periods of fasting to ward off NEC, resulting in a catabolic state of unintended starvation; early total parenteral nutrition and subnutritional trophic feedings were introduced into practice.33 During the past 2 decades, human milk science has blossomed and NICUs have begun to systematically adopt preferential use of mother's own milk. Human milk coupled with standardized feeding regimens34 is associated with important reductions in NEC and has now become a well-established standard of care,35 demonstrating both improved outcomes and cost savings.36,37
On the brain front large randomized controlled trials demonstrated the neuroprotective effects of cooling in infants with hypoxic-ischemic encephalopathy.38 And, in the last decade, nurses and nurse practitioners in leadership roles have collaborated with their neonatology and neurology physician partners to launch and refine highly specialized newborn units that provide advanced neurointensive care as well as specialized units and care teams focused on caring for the most vulnerable micro-premature infants; both have demonstrated early but promising measurable improvement in the quality, safety, and value of care.39,40
Beyond the usual mortality and morbidity challenges neonatal caregivers in many regions of the country have been struck as if by lightening by a new epidemic of substance use in pregnancy. Mothers and their infants have been dually impacted and NICUs are burgeoning with actively withdrawing infants. National multicenter quality improvement collaborative work commenced and partnerships with many states have been forged. Through a host of potentially better practices, mothers and infants were reunited. The care emphasis shifted to nurturing the mother and ensuring her comprehensive treatment and ability to support the infant. Standardized bundles of care ensured timely and safe discharge of infants home, with important decreases in length of stay, decreased need for (days exposed to) pharmacologic treatment, and decreases in cost.41,42
A second national epidemic emerged and the “Choosing Wisely” initiative focused on antibiotic overuse and misuse given 40-fold variations in NICU antibiotic use.43 Thereafter, a multicenter collaborative in partnership with the Centers for Disease Control and Prevention (CDC) demonstrated a 34% relative risk reduction in antibiotic use in 146 US NICUs and improved compliance with the CDC core elements of antibiotic stewardship.44
As the famous song denotes, “we've only just begun” the improvement journey. Unfortunately, many NICUs lag behind, perhaps unaware of the tremendous results of the larger CoP. And despite a myriad of successes it is sobering to acknowledge that variation in outcomes persist across virtually every published international data registry and comparative data set.45–59 This well-documented, persistent, and likely unwarranted variation in outcomes suggests that there is still much more room for orchestrated improvement!
LESSON 2: NURSES MUST REFUSE TO REMAIN INVISIBLE
We should take great pride and collectively celebrate many of the achievements of the past 20 years. The role of the neonatal nurse and the nurse practitioner has grown in scope and influence,59 and the number of doctorally prepared nurses nationally, and in our own neonatal community, has also grown dramatically.
Given the collegiality and teamwork we experience at the bedside, it is disappointing that recently published chronicles of progress in neonatology still frequently neglect to mention many of the critical contributions of neonatal nursing.61,62 We must be ever mindful that nurses not be relegated to the sidelines serving as the “invisible labor” in improvement science, notably absent or underrepresented in conference presentations, publications, and panels. It is equally regretful that in 2020 nurses are still often working on improvement “passion” projects on their days off, suggesting that we have yet to achieve full organizational respect and support. Although this level of professionalism is commendable, it is unlikely to sustain improvement efforts in the future.
We must ensure that, both now and in the future, nurses have a full seat at the table and that nurses and every NICU team member have open access to all of the sources of relevant data to drive their research and improvement work. Nurses must be recognized as subject matter experts, researchers, implementation scientists, and faculty contributors, as well as pivotal bedside caregivers and key partners with families. Now more than ever before, nurses are uniquely prepared to lead both unit-level and system-level improvement efforts.
Persistence pays off. Shirley Chisolm, the first African American woman elected to the US Congress once said, “If they don't give you a seat at the table, bring a folding chair.” One way or another, nurses, the profession that is most trusted by the public to improve the healthcare system must be present and fully accounted for!63
LESSON 3: IMPROVING OUTCOMES IS A SYNCHRONIZED TEAM SPORT
Nursing education and engagement are necessary, but alone they will not be sufficient to continue to drive improved outcomes for newborns and families in the future. Those who function in teams must be educated and trained in teams in concordance with the Institute of Medicine's recommendation. No longer solely under the control of the “captain of the ship” or the leaders in the “corner office,” quality improvement is a team sport and the team (nurses, social workers, respiratory therapists, dieticians, pharmacists, physical and occupational therapists, and parents) must engage in a synchronized way to drive improvement. As Paul Batalden64 challenges us, every team member must now recognize his or her duty not just to take good care of infants today but also to improve the care for the patients of tomorrow.
Furthermore, teams must be given the time and resources required to design and test improvements and to learn beyond their health system walls. Increasingly data suggest that when teams of teams come together to improve care through coordinated improvement networks, they can and will further accelerate the pace of improvement, as well as contribute to the development of more robust improvement science methods.26,27,32,41,44,64–67
LESSON 4: ADVOCATE TO CREATE INNOVATIVE AND FAMILY-LED NEWBORN INTENSIVE PARENTING UNITS (NIPU)
The inclusion and evolution of the families as both essential caregivers on the healthcare team and valued improvement experts codesigning the larger system of care are another evolutionary advancement over the past 20 years.68,69 Newborn intensive care units are recognizing the critical role that parents play in their infant's recovery and as such are striving to become newborn intensive parenting units similar to those in Norway, Sweden, and beyond.69 I predict that in the not-so-distant future, we will look back at the days when parents were routinely separated from their infants at birth and were classified as “visitors” held at bay by restrictive visiting hours (an unfortunate and disempowering term) as the dark ages of neonatology. Historically, families report they were told that their infants were deemed “too sick to be held” and sometimes waited 20, 30, and 40+ days to achieve this milestone moment. Now, armed with an improved understanding of development and epigenetics, nurses are increasingly acknowledging that infants are “too sick not to be held, comforted, and nurtured by their parents!”
To further reap the benefits of this paradigm shift, parents must be acknowledged as the most consistent caregiver on the child's team, and if they so desire must be increasingly present and participating in clinical rounds.70,71 In some progressive units parents are actually presenting their infant in rounds, sharing key observations about his or her status and care, and ensuring that the issues that matter most to their family are actively addressed. Parents who are working or unable to be present at this specific time of day can participate using readily available handheld technology. Discharge teaching and often associated delays could become a relic of the past when and if families have full professional and societal support to rightfully take their place at the bedside serving as continuous caregivers throughout their infant's stay.
THE EVOLVING FUTURE: SHARED DECISION-MAKING AND PARENT-REPORTED OUTCOMES
Given the remarkable accomplishments of the past 20 years, what lessons will we learn in the next 20 years? I believe nurses and the healthcare team will evolve into highly skilled coaches who relish their role as skilled collaborators with families. They will serve as codesigners with families of safe and effective care that is congruent with the patients' wants, needs, and preferences.72,73 Education and training in shared decision-making will be the norm—an essential skill for every NICU caregiver, with mandatory standardized universal training much akin to the Neonatal Resuscitation Program (NRP). In partnership with and increasingly led by family advisors, we will codesign and test shared decision-making tools to enhance our everyday collaboration with parents.73
Patient registries will become more transparent and more person-centered.66,67 Learning from other disciplines, neonatology will not only collect data about our current clinical, quality, and outcome measures but also will develop a subset of valid and reliable patient/parent-reported measures to balance our quality scorecard.
The power of big data will be further leveraged using artificial intelligence and advanced data visualizations into simple understandable information that is codesigned by families and providers and viewed at the bedside using interactive screens and clinical decision-making tools. These tools will increasingly allow true coproduction of care with our families.
The NICU team will receive real-time feedback, provided by engaged families who respond to a brief real-time survey in much the same way consumers rate their Uber rides. Families could be asked to share their experience immediately after daily rounds, using fast and frugal instruments such as CollaboRATE, a measure of care collaboration that can help us obtain feedback on our performance in rounds by asking 3 simple questions73:
- How much effort was made to help you understand your infant's status?
- How well did the care team listen to things that matter most to you and your family?
- How successful were we in including you and your family in codesigning the next steps in the plan of care?
These “everyday data” will be reviewed by the team who will strive to understand and improve in real-time as they iteratively test small improvements in a cycle of continuous learning.
In our quest to cocreate the ideal NICU of the future parents will routinely partner with professionals to codesign both the content of care for their infant and a system of care focused on parent support during critical transitions across health settings.
Beyond the hospital walls, progressive parent-led organizations such as the NEC Society will be even more fully empowered to influence the research and clinical improvement agenda as we collectively aim to contribute to their vision—“a world without NEC.” Learning from this seminal work patient advocates, researchers and clinicians come to the table using the PICORI “all-in” parent professional meeting model to create a sense of urgency and demonstrate true partnership.74
EVOLVING FUTURE: FULLY ENABLED TELEHEALTH SUPPORT BETWEEN TERTIARY AND COMMUNITY HOSPITALS AND IN THE HOME
One of the most important and positive “disruptive innovations” will be the development of a broad technology-enhanced care network that provides high-level care to any infant, anytime, anywhere using tools that already exist but have yet to be fully deployed. Care in community hospitals will be enhanced by the “virtual” presence of clinical experts, now trained as skilled resuscitation coaches, ensuring the “best start” whenever possible, and potentially enabling more infants to be cared for in their community.75–76
Enabled by technology and a mind-set of healthcare without hospital walls, we will focus on potentially preventable NICU admissions and perhaps modulate some of the overuse, underuse, and misuse in our current model of NICU care.59
Care by parent units in the hospital will drive safe but earlier discharge home from the hospital. This care will be supported by technology-enhanced home environments, present even in rural “deserts” of care, with nurse healthcare coaches and consultants who are available 24/7 to support tele-home care for infants of increasing complexity.77–81 As the newly designated specialty of telehealth nursing comes of age,82 select nurses will further evolve from hands-on technicians to masterful coaches who will demonstrate improved care, lower hospital readmissions, do so at a lower cost of care, and most importantly with improved family satisfaction and empowerment.
EVOLVING FUTURES: ADDRESSING THE SOCIAL DETERMINANTS OF HEALTH
In healthcare our moral imperative has shifted from simply trying to “do no harm” to an increased call to action and advocacy for those who cannot speak for themselves.
There is a growing socioeconomic chasm in our society at every level. Although medical care is of critical importance, likely up to 50% of health outcomes are related to critical social determinants of health, such as homelessness or unsecure, or substandard housing, food insecurity, lack of language concordant care, lack of transportation or access to care, and even basic neighborhood conditions such as air quality, access to nutritional food sources, and green space.83,84
The epidemiologic data reveal striking regional and geographic variations in care that are often best explained by the social and economic disparities. Invisible at first glance, these differences are pervasive perhaps because structural racism is so pervasive that it has contaminated the “groundwater” of our social fabric.85 We spend weeks, months, and sometimes years saving lives of vulnerable infants, only to send some of them home without the follow-through and support that will be critical to keep them alive and well beyond the hospital walls.
Our preferred future of best care for every infant and family cannot be achieved until we have the courage and the collective will to look upstream at the causal factors related to prematurity and outcome disparities and to attempt to systematically address these sensitive issues.86
As black and brown infants continue to die at alarmingly accelerated rates, nurses cannot remain silent; if we do so, we are complicit in perpetuating the disparities.87 Health equity is like oxygen; invisible on the surface but lack of it is deadly nonetheless. We all know the color of and influence of money; can we continue to fail to recognize the color of health? Social justice and equitable systems of care will only be possible through collective action, and this will require a new wave of activism and moral leadership from nurses.
Access to healthcare is a right for all, not a privilege for a few, and profits gained by health insurance companies that do so based upon marginalizing human health should not be tolerated.88
EVOLVING FUTURES: MOVING FROM COMMUNITIES OF PRACTICE TO TRUE LEARNING HEALTHCARE SYSTEMS
If we want to improve outcomes, then healthcare systems and their teams must work differently. This new way of work will require organizational learning and flexible organizational and operational infrastructures that are radically different from the status quo.89–92
We have created a “tribal survival” culture in our organizations, sometimes competing for scarce resources. To think differently and work differently we will need to reorganize our work moving away from the traditional roles and educational affiliations (departments of medicine, nursing, etc).
To work differently, we must evolve—into a true learning healthcare system that transcends a single organization and leverages a technology-enhanced digital ecosystem to support our work.92 We must value and reward often forgotten team members such as skilled social workers who can shape human health in important ways.
Leadership and organizational structures in a learning healthcare system can must support the training and accountability of fully integrated interdisciplinary teams that in partnership with patients will design improved systems of care. Patients, caregivers, and payers can all win. Leaders in this new world order will increasingly be imbedded with the “troops,” positioned close to the sharp end of healthcare, avoiding the insulation of the leadership-suite. They will continue to elevate their close partnership with our clinical team, helping translate the strategy into action and breaking down the system, academic, financial, and administrative silos that can easily get in the way of providing the right care, for the right patient, at the right time, in the right place, with the right resources that we can rightfully sustain.
We can and we must learn to cultivate intentional organizational structural changes that catapult us from the “me” to “we” value propositions as these will be required to create our preferred future.
We are well on our way to create our preferred future—an ever-evolving learning health system in full partnership with patients and families, with nurses leading the way. Harnessing technology that already exists,92 we have the opportunity to craft our emancipation from the old ways. Supported by a transparent and easily accessible to all patient-centered data registry67 merging both maternal and neonatal data with new measures of patient-reported outcomes is also within our grasp. With these tools, we can cocreate new pathways for caring using shared decision-making expertise and tools.
When we launched ANC in 2001, our organizational knowledge, skills, and technology support to do so simply did not exist. It was as they say in the business a “moon shot” and we were building the craft as we launched.
As ANC turns 20 neonatal nurses are even more prepared and strategically positioned for the next moon shot—one that each of you will champion and lead. You have a growing foundation of evidence, are grounded in our history, are fueled by exponential expertise, and possess exemplary empathy and compassion. You also have an inordinate ability to inspire and innovate. And, most importantly, I fully trust that our collective journey to the future will be guided by an enduring passion for patients and families, striving each day to become more fully informed by their wisdom. Godspeed!
—Madge E. Buus-Frank, DNP, APRN-BC, FAAN
Senior Scientist Coproduction Collaboratory
The Dartmouth Institute for Health Policy and Clinical Practice
Neonatal Nurse Practitioner
The Children's Hospital at Dartmouth
Lebanon, New Hampshire
NANN Board of Directors—2001;
Advances in Neonatal Care 2001 Editorial Board;Dr Jerold F. Lucey—Editor-in-Chief Pediatrics 1974-2008, who provided wisdom, guidance, and insight throughout the journal launch; and Dr Marlene Walden—a co-collaborator on the journal launch and a true mentor. She was someone who believed in me more than I dared to believe in myself.
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