Health policy and quality improvement initiatives exist symbiotically. Quality projects can be spurred by policy decisions, such as the creation of financial incentives for high-value care. Then, advocacy can streamline high-value care, offering opportunities for quality improvement scholars to create projects consistent with evidenced-based care. Thirdly, as pediatrics and neonatology reconcile with value-based payment structures, successful quality initiatives may serve as demonstration projects, illustrating to policy-makers how best to allocate and incentivize resources that optimize newborn health. And finally, quality improvement (QI) can provide an essential link between broad reaching advocacy principles and boots-on-the-ground local or regional efforts to implement good ideas in ways that work practically in particular environments. In this paper, we provide examples of how national legislation elevated the importance of QI, by penalizing hospitals for low quality care. Using Medicaid coverage of pasteurized human donor milk as an example, we discuss how advocacy improved cost-effectiveness of treatments used as tools for quality projects related to reduction of necrotizing enterocolitis and improved growth. We discuss how the future of QI work will assist in informing the agenda as neonatology transitions to value-based care. Finally, we consider how important local and regional QI work is in bringing good ideas to the bedside and the community.
Health Policy , Quality Improvement , Humans , Infant, Newborn , United States , Neonatology/standards , Medicaid , Milk, Human , Patient Advocacy , Pasteurization , Enterocolitis, Necrotizing/therapy , Enterocolitis, Necrotizing/prevention & control , Enterocolitis, Necrotizing/economics
Advocacy is an increasingly important skill for neonatologists. As social factors play a greater influence on short & long-term newborn outcomes, neonatal physicians must be attentive to policy factors and work to ensure they benefit the health of both patients and the specialty. In this article, we review advocacy issues of current relevance to neonatal practice, including the "Born Alive Executive Order," the "Newborn Screening Saves Lives Act," subspecialty loan repayment and legislation related to donor human milk, as well as introduce topics further discussed as part of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine Advocacy Series.
Neonatology , Infant, Newborn , Humans , United States , Child , Neonatologists , Neonatal Screening
Genomic and gene-targeted therapies hold great promise in addressing the global issue of rare diseases. To achieve this promise, however, it is critical the twin goals of equity in access to testing and diagnosis, and equity in access to therapy be considered early in the life cycle of development and implementation. Rare disease researchers and clinicians must simultaneously recognize the life-altering potential of early diagnosis and administration of gene-targeted therapeutics while acknowledging that not everyone who experiences a rare disease and needs these therapies will be able to afford or access them. Achieving equity in the development of and access to gene-targeted therapies will not only require innovations in research, clinical, regulatory, and reimbursement frameworks, but will also necessitate increased attention to the ethical, legal, and social implications when establishing research paradigms and the translation of research results into novel interventions for rare genetic diseases. This article highlights and discusses the growing importance and recognition of health equity across the spectrum of rare disease research and care delivery.
Health Equity , Rare Diseases , Humans , Rare Diseases/diagnosis , Rare Diseases/genetics , Rare Diseases/therapy , Delivery of Health Care , Genomics
