Scaling Family Voices and Engagement to Measure and Improve Systems Performance and Whole Child Health: Progress and Lessons from the Child and Adolescent Health Measurement Initiative.

BACKGROUND: The 1997 legislation authorizing the United States Child Health Insurance Program sparked progress to measure and publicly report on children's healthcare services quality and system performance. To meet the moment, the national Child and Adolescent Health Measurement Initiative (CAHMI) public-private collaboration was launched to put families at the center of defining, measuring and using healthcare performance information to drive improved services quality and outcomes. METHODS: Since 1996 the CAHMI followed an intentional path of collaborative action to (1) articulate shared goals for child health and advance a comprehensive, life-course and outcomes-based healthcare performance measurement and reporting framework; (2) collaborate with families, providers, payers and government agencies to specify, validate and support national, state and local use of dozens of framework aligned measures; (3) create novel public-facing digital data query, collection and reporting tools that liberate data findings for use by families, providers, advocates, policymakers, the media and researchers (Data Resource Center, Well Visit Planner); and (4) generate field building research and systems change agendas and frameworks (Prioritizing Possibilities, Engagement In Action) to catalyze prevention, flourishing and healing centered, trauma-informed, whole child and family engaged approaches, integrated systems and supportive financing and policies. CONCLUSIONS: Lessons call for a restored, sustainable family and community engaged measurement infrastructure, public activation campaigns, and undeterred federal, state and systems leadership that implement policies to incentivize, resource, measure and remove barriers to integrated systems of care that scale family engagement to equitably promote whole child, youth and family well-being. Population health requires effective family engagement.

Supreme Court Impacts in Public Health Law: 2021-2022.

In a dynamic term of the United States Supreme Court in 2021-2022 a series of critical cases raise manifold changes and impacts on individual and communal health through 10 key areas ranging from abortions to vaccinations.

National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs.

Children and youth with special health care needs (CYSHCN) "have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and also require health and related services of a type or amount beyond that required by children generally." CYSHCN rely on health systems, which extend beyond traditional health care entities, to optimize their health and well-being. The current US health system is not fully equipped and functioning to meet the needs of CYSHCN. Recognizing this, the Maternal and Child Health Bureau and the US Health Resources and Services Administration established the Research Network on Health Systems for CYSHCN (CYSHCNet, http://www.cyshcnet.org). With input from >800 US stakeholders, CYSHCNet developed a national research agenda on health systems for CYSHCN designed to: 1) highlight important health system challenges faced by key stakeholders (ie, patients and families, health care providers, insurers, administrators, etc.); 2) organize research topics and goals to identify opportunities for improvement, to address challenges and to promote progress toward the ideal health system; and 3) provide a blueprint for health systems research ideas and studies that will guide CYSHCN investigators and other stakeholders going forward. We introduce the 6 research topics currently included in the research agenda-transition to adulthood, caregiving, family health, child health care, principles of care, and financing-to inform and guide investigators as they embark on a trajectory of health systems research on CYSHCN.

Research on Family Health and Children and Youth With Special Health Care Needs.

Families of children and youth with special health care needs (CYSHCN) can face challenges with regard to health and well-being. Health systems are designed to support CYSHCN but do not often consider the health and well-being of their family. Despite a growing body of literature, substantial gaps remain in our understanding of the impact of caregiving on family health and well-being and mechanisms of supporting families. In order to better understand and address these gaps, a national CYSHCN network developed a national research agenda to prioritize key areas of insufficient understanding of health and well-being for families of CYSHCN. Questions identified by the research agenda include: 1) How can family resiliency and adaptability be measured and improved? 2) How can we better assess family mental health needs and implement appropriate interventions? 3) What is the impact of family health on CYSHCN health outcomes? This paper describes a review of what is currently known regarding health for families of CYSHCN, gaps in the literature focused on the research agenda questions, and recommendations for future research. Based on the research agenda and current state of research for family health of CYSHCN, the authors recommend focusing on resiliency and adaptability as outcomes, using implementation science to address mental health concerns of family members and to further assess the impact of family health on health outcomes of CYSHCN. In addition, research should have a special focus on diverse populations of families and consider these questions in the context of different family structures.

Legal Challenges Underlying COVID-19 Vaccinations.

Immunizing hundreds of millions against COVID- 19 through the most extensive national vaccine campaign ever undertaken in the United States has generated significant law and policy challenges.

Using modern human cortical bone distribution to test the systemic robusticity hypothesis.

The systemic robusticity hypothesis links the thickness of cortical bone in both the cranium and limb bones. This hypothesis posits that thick cortical bone is in part a systemic response to circulating hormones, such as growth hormone and thyroid hormone, possibly related to physical activity or cold climates. Although this hypothesis has gained popular traction, only rarely has robusticity of the cranium and postcranial skeleton been considered jointly. We acquired computed tomographic scans from associated crania, femora and humeri from single individuals representing 11 populations in Africa and North America (n = 228). Cortical thickness in the parietal, frontal and occipital bones and cortical bone area in limb bone diaphyses were analyzed using correlation, multiple regression and general linear models to test the hypothesis. Absolute thickness values from the crania were not correlated with cortical bone area of the femur or humerus, which is at odds with the systemic robusticity hypothesis. However, measures of cortical bone scaled by total vault thickness and limb cross-sectional area were positively correlated between the cranium and postcranium. When accounting for a range of potential confounding variables, including sex, age and body mass, variation in relative postcranial cortical bone area explained ∼20% of variation in the proportion of cortical cranial bone thickness. While these findings provide limited support for the systemic robusticity hypothesis, cranial cortical thickness did not track climate or physical activity across populations. Thus, some of the variation in cranial cortical bone thickness in modern humans is attributable to systemic effects, but the driving force behind this effect remains obscure. Moreover, neither absolute nor proportional measures of cranial cortical bone thickness are positively correlated with total cranial bone thickness, complicating the extrapolation of these findings to extinct species where only cranial vault thickness has been measured.

Families of Children With Medical Complexity: A View From the Front Lines.

This article, written by a group of experienced parents of children with medical complexity (CMC), provides an overview of the demands of managing care from their unique perspective. The article articulates why attention to understanding the challenges that families of CMC face with a fragmented health care system, inadequate health insurance coverage, deficits in the delivery of medical care, and problems accessing other critical services (as well as lack of support for children and adolescents in developing and exercising self-management skills) are vital to efforts to improve the current system and positively impact the life course of vulnerable populations. The authors discuss the financial and intangible costs experienced by families of CMC and other stakeholders (including providers, payers, and others), as well as the benefits that can result when effective, flexible, comanaged team-based care coordination is provided within the environment that is the most natural locus of care for the family. The authors detail the role of policy strategies that provide protections for CMC and the importance of family-led advocacy and support organizations in helping families "on the front lines." Throughout the article, the case is made that families authentically involved at every level of health care systems are critical partners in designing policies and systems that will improve care for CMC. The experiences of families of CMC should inform and guide efforts to improve systems of care, thus positively impacting the life course of this vulnerable population.

The Eye of the Beholder: A Discussion of Value and Quality From the Perspective of Families of Children and Youth With Special Health Care Needs.

There is broad agreement that increasing the cost-effectiveness and quality of health care services, thereby achieving greater value, is imperative given this country's current spiraling costs and poor health outcomes. However, how individuals or stakeholder groups define value may differ significantly. Discussion of value in the context of health care, in particular value-based purchasing and value-based insurance design, must acknowledge that there is no universal consensus definition as to what constitutes value. To date, the consumer perspective has been underrepresented in discussions of value-based strategies such as pay for performance, capitated and bundled payments, and high-deductible health plans, which have been driven primarily by payers and providers. This article will discuss 3 elements of value from the perspective of families of children and youth with special health care needs: the role of families in the delivery of care, consumer perspectives on what constitutes quality for children and youth with special health care needs, and health care and health care financing literacy, decision-making, and costs. The undervalued contributions made by family members in the delivery and oversight of pediatric care and the importance of partnering with them to achieve the goals of the Triple Aim are stressed. The article closes with a discussion of recommendations for a future policy and research agenda related to advancing the integration of the consumer perspective into value-based purchasing and value-based insurance design.

A Narrative Review of Patient and Family Engagement: The "Foundation" of the Medical "Home".

BACKGROUND: Patient and family engagement (PFE) is vital to the spirit of the medical home. This article reflects the efforts of an expert consensus panel, the Patient and Family Engagement Workgroup, as part of the Society of General Internal Medicine's 2013 Research Conference. OBJECTIVE: To review extant literature on PFE in pediatric and adult medicine and quality improvement, highlight emerging best practices and models, suggest questions for future research, and provide references to tools and resources to facilitate implementation of PFE strategies. METHODS: We conducted a narrative review of relevant articles published from 2000 to 2015. Additional information was retrieved from personal contact with experts and recommended sources from workgroup members. RESULTS: Despite the theoretical importance of PFE and policy recommendations that PFE occurs at all levels across the health care system, evidence of effectiveness is limited, particularly for quality improvement. There is some evidence that PFE is effective, mostly related to engagement in the care of individual patients, but the evidence is mixed and few studies have assessed the effect of PFE on health outcomes. Measurement issues and the lack of a single comprehensive conceptual model pose challenges to progress in this field. Recommendations for future research and a list of practical tools and resources to facilitate PFE are provided. CONCLUSIONS: Although PFE appeals to patients, families, providers, and policy-makers, research is needed to assess outcomes beyond satisfaction, address implementation barriers, and support engagement in practice redesign and quality improvement. Partnering with patients and families has great potential to support high-quality health care and optimize outcomes.

Psychometric Evaluation of a Consumer-Developed Family-Centered Care Assessment Tool.

The objective of this study was to create a psychometrically sound measure of family-centered care, the Family-Centered Care Assessment (FCCA), developed through a process led by families in collaboration with maternal and child health leaders. The items for the FCCA scale were initially developed by families of children and youth with special needs in partnership with pediatric providers and researchers. Using an Institutional Review Board-approved research protocol, the questions were revised based on input from focus groups of diverse parents in three states. Parental responses (N = 790) to the revised 59-item survey were collected online from families in 49 states. Item distributions uniformly showed excellent spread. A principal axes factor analysis confirmed the existence of a single factor. Rasch modeling item analyses identified a reduced subset of 24 items that demonstrated excellent psychometric properties. All items met the criteria for a linear Rasch scale. Empirical evidence in support of the construct validity of the 24-item measure was derived: all items had a positive and substantial item-total correlation; person alpha scale reliability was >0.80 and the item reliability was >0.90; both separation indices were >2.0; infit and outfit statistics were within 0.5-1.5; and item difficulties ranged between -2 and +2 logits. Strong rank-ordered associations and large effect sizes were observed for six indicators of quality of care. This study's family-led process produced a tool, the FCCA, to measure families' experience of care with excellent psychometric properties.

Inequities in health care needs for children with medical complexity.

Children with special health care needs are believed to be susceptible to inequities in health and health care access. Within the group with special needs, there is a smaller group of children with medical complexity: children who require medical services beyond what is typically required by children with special health care needs. We describe health care inequities for the children with medical complexity compared to children with special health care needs but without medical complexity, based on a secondary analysis of data from the 2005-06 and 2009-10 National Survey of Children with Special Health Care Needs. The survey examines the prevalence, health care service use, and needs of children and youth with special care needs, as reported by their families. The inequities we examined were those based on race/ethnicity, primary language in the household, insurance type, and poverty status. We found that children with medical complexity were twice as likely to have at least one unmet need, compared to children without medical complexity. Among the children with medical complexity, unmet need was not associated with primary language, income level, or having Medicaid. We conclude that medical complexity itself can be a primary determinant of unmet needs.

Optimizing health and health care systems for children with special health care needs using the life course perspective.

To date, life course research in maternal and child health has largely focused on elucidating fetal and early life influences on adult health and less on promoting the health of children with special health care needs (CSHCN). Consideration of life course theory (LCT) for CSHCN is especially important given their increasing prevalence and comorbidity, their disproportionate vulnerability to weaknesses or instability in the health care system, and the growing evidence linking child and adult health and quality of life. In this commentary we seek to advance the consideration of LCT for CSHCN. We (1) briefly summarize key issues and the importance of a life course approach for CSHCN; (2) present illustrative findings from population-based cross-sectional data that serve to generate hypotheses that can be more rigorously examined when population-based longitudinal data become available; and (3) discuss the application of life course principles as a driving force in the continued implementation and improvement of integrated systems of care for CSHCN.

Parents' perspectives on access to rehabilitation services for their children with special healthcare needs.

PURPOSE: This study examined parents' (caregivers') perspectives on problems related to access to therapy services for their children with special healthcare needs (CSHCN) as predicted by child, family, and health insurance characteristics. METHODS: Secondary data analysis was conducted using the Family Partners Project database. A subsample of 1027 parents of CSHCN who received rehabilitation services in the year before the study were the participants. RESULTS: Child, family, and insurance characteristics explained 19.1% of problems related to access to rehabilitation services with family characteristics being the strongest predictor (10.8%). Odds ratios are reported for these characteristics. CONCLUSION: Family financial hardship, the child's age, and managed care practices in health insurance plans may be the primary factors contributing to problems related to access to therapy services for CSHCN. Therapists may need a better understanding of family challenges with access to services to be more effective advocates.