Learning from an equitable, data-informed response to COVID-19: Translating knowledge into future action and preparation.

Introduction: The COVID-19 pandemic revealed numerous barriers to effectively managing public health crises, including difficulties in using publicly available, community-level data to create learning systems in support of local public health decision responses. Early in the COVID-19 pandemic, a group of health care partners began meeting to learn from their collective experiences. We identified key tools and processes for using data and learning system structures to drive equitable public health decision making throughout different phases of the pandemic. Methods: In fall of 2021, the team developed an initial theory of change directed at achieving herd immunity for COVID-19. The theoretical drivers were explored qualitatively through a series of nine 45-min telephonic interviews conducted with 16 public health and community leaders across the United States. Interview responses were analyzed into key themes to inform potential future practices, tools, and systems. In addition to the interviews, partners in Dallas and Cincinnati reflected on their own COVID-19 experiences. Results: Interview responses fell broadly into four themes that contribute to effective, community driven responses to COVID-19: real-time, accessible data that are mindful of the tension between community transparency and individual privacy; a continued fostering of public trust; adaptable infrastructures and systems; and creating cohesive community coalitions with shared alignment and goals. These themes and partner experiences helped us revise our preliminary theory of change around the importance of community collaboration and trust building and also helped refine the development of the Community Protection Dashboard tool. Conclusions: There was broad agreement amongst public health and community leaders about the key elements of the data and learning systems required to manage public health responses to COVID-19. These findings may be informative for guiding the use of data and learning in the management of future public health crises or population health initiatives.

Method to share learning in real time at scientific meetings: lessons from the IHI-BMJ International Conference on Quality and Safety.

BACKGROUND: Capturing and disseminating key learnings on emerging themes for conference participants is challenging, yet also presents a significant opportunity to distill, share and discuss learning in real time with conference organisers and attendees. The Institute for Healthcare Improvement (IHI) and British Medical Journal (BMJ) collaborate annually to convene a Health Quality and Safety conference attracting 1000 to 3000 attendees each year. AIM: To test a learning system that harvested and synthesised the key lessons shared by conference participants at the 2022 IHI-BMJ Gothenburg Forum, and to disseminate this content. METHODS: Twelve invited Forum attendees collected and shared their 'breakthrough learnings' via electronic survey. Three IHI team members synthesised the participants' responses into themes that were shared and refined in real time at an in-person Forum session including 35 additional participants. RESULTS: Participants shared four learning themes: collaboration and co-production, trust, meaningful communication about data, and broadening the scope of the Science of Improvement field to multi-disciplinary and multi-system approaches. CONCLUSIONS: Collection of key learning on emerging topics of interest to the health system improvement community is feasible and yielded information both for dissemination and real-time learning. While not representing the full scope of the conference learnings, the content resonated with an additional group of reviewers at the conclusion of the conference and has guided planning for the next annual meeting. This approach may be helpful in capturing key themes for discussion and planning by similar improvement communities.

Measuring Progress Toward Equity in Health Care.

In this commentary, we consider the need for measurement approaches that support efforts to advance health care equity nationwide in a meaningful and sustained way. The authors of this piece are co-chairs of the Measurement Steering Committee of Rise to Health: A National Coalition for Equity in Health Care (www.risetohealthequity.org), and our writing is directly informed by our work in the Coalition. We present three foundational questions and our recommendations for addressing them: 1.) Tracking progress: Will we be able to see if change occurs? 2.) Ensuring accountability: Are we measuring only what is easy to measure or what is meaningful? 3.) Inspiring and sustaining collective action: What will hold a diverse set of institutions together?

Developing capacity for learning community systems: Experiences from the 100 Million Healthier Lives SCALE Initiative.

Introduction: This paper explores the capabilities that contribute to community transformation and the common pathways followed by communities in the 100 Million Healthier Lives SCALE (Spreading Community Accelerators through Learning and Evaluation) initiative in their transformation journeys towards a "Culture of Health". Methods: Funded by the Robert Wood Johnson Foundation (RWJF), from 2016 to 2020, between 18 to 24 community coalitions nationwide participated in SCALE, the goal of which was to co-design, implement, test, and scale up a model called the Community of Solutions (COS) Framework, that built community capacity around a set of skills and behaviors to advance culture change and create sustainable improvement in health, well-being, and equity. We adapted and applied two qualitative research techniques, meta-ethnography and participatory action synthesis, to evaluate SCALE initiative data. Results: Eight concepts emerged that represent the knowledge, capabilities and practices commonly acquired and utilized across the communities. Overall, these concepts emphasize individual and team leadership, quality improvement skills, an intentional focus on equity, and partnerships for spread and sustainment. Concepts were linked into lines of arguments which were unique storylines explaining the transformation pathways. Three stories of the transformation process emerged from the data. Causal Loop Diagrams (CLDs) were created to represent non-linear system relationships and visually capture some of the most important dynamics of the process of transformation. Even with vast heterogeneity among the SCALE communities and the diversity of activities that the communities undertook, our analysis showed there were a few basic principles that undergirded the process of building capability for transformation. Conclusions: The knowledge from our findings should be useful to expand further research and practice in community learning systems.

Well-Being in the Nation: A Living Library of Measures to Drive Multi-Sector Population Health Improvement and Address Social Determinants.

Policy Points Well-being In the Nation (WIN) offers the first parsimonious set of vetted common measures to improve population health and social determinants across sectors at local, state, and national levels and is driven by what communities need to improve health, well-being, and equity. The WIN measures were codesigned with more than 100 communities, federal agencies, and national organizations across sectors, in alignment with the National Committee on Vital and Health Statistics, the Foundations for Evidence-Based Policymaking Act, and Healthy People 2030. WIN offers a process for a collaborative learning measurement system to drive a learning health and well-being system across sectors at the community, state, and national levels. The WIN development process identified critical gaps and opportunities in equitable community-level data infrastructure, interoperability, and protections that could be used to inform the Federal Data Strategy.

Participation in a Quality Improvement Collaborative and Change in Maternity Care Practices.

Care immediately following birth affects breastfeeding outcomes. This analysis compared improvement in maternity care practices from 2011 to 2013 among hospitals participating in a quality improvement collaborative, Best Fed Beginnings (BFB), to hospitals that applied but were not selected (non-Best Fed Beginnings [non-BFB]), and other hospitals, using Centers of Disease Control and Prevention's Maternity Practices in Infant Nutrition and Care (mPINC) survey data to calculate total and subscores for 7 care domains. Analysis of covariance compared change in scores from 2011 to 2013 among BFB, non-BFB, and other hospitals. BFB hospitals had twice the increase in mPINC score compared to non-BFB and a 3-fold increase compared to other hospitals. Learning collaborative participation may have accelerated progress in hospitals implementing breastfeeding-supportive maternity care.

Quality improvement in population health systems.

Quality improvement methods have achieved large sustainable changes in health care quality and health outcomes. Transforming health care into a population health system requires methods for innovation and improvement that can work across professions and sectors. It may be possible to replicate improvement successes in healthcare settings within and across the broader systems of social, educational, and other human services that influence health outcomes in communities. Improvement methods could translate the rhetoric of collaboration, integration and alignment into practice across the fragmented health and human service sectors in the U.S.

Women's Experiences with Neuraxial Labor Analgesia in the Listening to Mothers II Survey: A Content Analysis of Open-Ended Responses.

BACKGROUND: Most women who give birth in United States hospitals receive neuraxial analgesia to manage pain during labor. In this analysis, we examined themes of the patient experience of neuraxial analgesia among a national sample of U.S. mothers. METHODS: Data are from the Listening to Mothers II survey, conducted among a national sample of women who delivered a singleton baby in a U.S. hospital in 2005 (N = 1,573). Our study population consisted of women who experienced labor, did not deliver by planned cesarean, and who reported neuraxial analgesia use (n = 914). We analyzed open-ended responses about the best and worst parts of women's birth experiences for themes related to neuraxial analgesia using qualitative content analysis. RESULTS: Thirty-three percent of women (n = 300) mentioned neuraxial analgesia in their open-ended responses. We found that effective pain relief was frequently spontaneously mentioned as a key positive theme in women's experiences with neuraxial analgesia. However, some women perceived timing-related challenges with neuraxial analgesia, including waiting in pain for neuraxial analgesia, receiving neuraxial analgesia too late in labor, or feeling that the pain relief from neuraxial analgesia wore off too soon, as negative aspects. Other themes in women's experiences with neuraxial analgesia were information and consent, adverse effects of neuraxial analgesia, and plans and expectations. CONCLUSIONS: The findings from this analysis underscored the fact that women appreciate the effective pain relief that neuraxial analgesia provides during childbirth. Although pain control was 1 important facet of women's experiences with neuraxial analgesia, their experiences were also influenced by other factors. Anesthesiologists can work with obstetric clinicians, nurses, childbirth educators, and pregnant and laboring patients to help mitigate some of the challenges with timing, communication, neuraxial analgesia administration, or expectations that may have contributed to negative aspects of women's birth experiences.

Positive childbirth experiences in U.S. hospitals: a mixed methods analysis.

Research on maternity care quality in the US often focuses on avoiding adverse events. Positive birth experiences receive less attention. This analysis used a mixed methods approach to identify factors associated with confidence and positive experiences during birth among a national sample of U.S. mothers. Data are from a nationally representative survey of women who delivered a singleton baby in a US hospital in 2005 (N = 1,573). We explored the relationship between confidence, positive birth experiences and socio-demographic characteristics as well as factors related to the clinical encounter and health systems, including common obstetric procedures and interventions. Self-reported confidence during birth was the outcome in quantitative analyses. We used logistic regression analysis and qualitative analysis of open-ended survey responses. Approximately 42% of mothers reported feeling confident during birth. Confidence going into labor was the strongest predictor of confidence during birth (adjusted odds ratio 12.88 for nulliparous women, 8.54 for parous women). Black and Hispanic race/ethnicity (compared to white) and having partner support were positively associated with confidence during birth for nulliparous women. Qualitative analyses revealed that positive experiences were related to previous birth experiences, communication between women and their clinicians, perceptions of shared decision-making, and communication among clinicians related to the timing and logistics of managing complications and coordinating care. For clinicians who care for women during pregnancy and childbirth, thoughtful, deliberate attention to factors promoting positive birth experiences may help create circumstances amenable to enhancing the quality of obstetric care and improving outcomes for mothers and infants.

Recommendations for evaluation of health care improvement initiatives.

Intensive efforts are underway across the world to improve the quality of health care. It is important to use evaluation methods to identify improvement efforts that work well before they are replicated across a broad range of contexts. Evaluation methods need to provide an understanding of why an improvement initiative has or has not worked and how it can be improved in the future. However, improvement initiatives are complex, and evaluation is not always well aligned with the intent and maturity of the intervention, thus limiting the applicability of the results. We describe how initiatives can be grouped into 1 of 3 improvement phases-innovation, testing, and scale-up and spread-depending on the degree of belief in the associated interventions. We describe how many evaluation approaches often lead to a finding of no effect, consistent with what has been termed Rossi's Iron Law of Evaluation. Alternatively, we recommend that the guiding question of evaluation in health care improvement be, "How and in what contexts does a new model work or can be amended to work?" To answer this, we argue for the adoption of formative, theory-driven evaluation. Specifically, evaluations start by identifying a program theory that comprises execution and content theories. These theories should be revised as the initiative develops by applying a rapid-cycle evaluation approach, in which evaluation findings are fed back to the initiative leaders on a regular basis. We describe such evaluation strategies, accounting for the phase of improvement as well as the context and setting in which the improvement concept is being deployed. Finally, we challenge the improvement and evaluation communities to come together to refine the specific methods required so as to avoid the trap of Rossi's Iron Law.

The Healthy Weight Collaborative: quality improvement methods promoting healthy weight.

Promoting healthy weight requires innovative approaches and a concerted response across all sectors of society. This commentary features the framework guiding the Healthy Weight Collaborative, a two-phased quality improvement (QI) learning collaborative and key activity of the Collaborate for Healthy Weight initiative. Multi-sector teams from primary care, public health, and community-based organizations use QI to identify, test, and implement program and policy changes in their communities related to promoting healthy weight. We describe the Collaborative's overall design based on the Action Model to Achieve Healthy People 2020 Goals and our approach of applying QI methods to advance implementation of sustainable ways to promote healthy weight and healthy equity. We provide specifics on measurement and change strategies as well as examples of Plan-Do-Study-Act cycles from teams participating in Phase 1 of the Collaborative. These teams will serve as leaders for sustainable, positive change in their communities.

Hemoglobinopathy Learning Collaborative: using quality improvement (QI) to achieve equity in health care quality, coordination, and outcomes for sickle cell disease.

Care and outcomes for individuals living with sickle cell disease (SCD) vary across institutions and communities. The Hemoglobinopathy Learning Collaborative (HLC) seeks to improve outcomes across the life course through improvement science. Faculty identified five key drivers of improved outcomes: a strong community network; knowledgeable, proactive individuals, families and providers; reliable identification and follow-up; seamless co-management between primary and specialty care; and appropriate treatment for acute episodes. Using a modified Delphi process, we selected improvement measures aligned with the drivers. Data are collected via a Web-based system linked to a reporting portal. Participating teams include consumers, community organizations and primary and specialty care providers. This commentary reviews the context of SCD in the U.S.; describes the framework, measures, and technology infrastructure already created for the HLC; reports on the early experience of teams; highlights the initiative's challenges and opportunities; and reflects on its implications in the setting of health reform.

Educating health care professionals in advocacy for childhood obesity prevention in their communities: integrating public health and primary care in the Be Our Voice project.

OBJECTIVES: We assessed the perceived need for and the effectiveness of the Be Our Voice advocacy training. In this training, health care professionals learned public health strategies to advocate for environmental systems changes to prevent childhood obesity in their communities. METHODS: We assessed 13 trainings across 8 pilot sites. We conducted 2 rounds of surveys with participants-pre-training (n=287, 84% response rate) and immediately post-training (n=254, 75% response rate)-and semi-structured interviews with participants after training (n=25). RESULTS: We uncovered essential and promising elements of the training. Primary care providers found the Be Our Voice training effective at building their comfort with and motivation for engaging in public health advocacy; they reported achieving learning objectives, and they had positive responses to the training overall and to specific sessions. They articulated the need for the training and plans for advocacy in their communities. CONCLUSIONS: The Be Our Voice training provides an opportunity to integrate primary care providers into public health, community-based advocacy. It may be a model for future educational offerings for health care professionals in graduate and postgraduate training and in practice.

Policies to support obesity prevention for children: a focus on of early childhood policies.

Policies at many levels may help to shape environments that promote healthy weight and prevent obesity. We present policies to support obesity prevention for young children. We highlight policy Sand environmental systems change examples in the areas of promoting breastfeeding and providing healthy affordable food and information about food in community and child care settings and promoting physical activity in child care and the community. We address the role of the health care system and health care professionals to shape and advocate for policy and environmental systems change and provide resources for pediatric health care professionals to engage in community-based advocacy.

HLA alloimmunization is associated with RBC antibodies in multiply transfused patients with sickle cell disease.

BACKGROUND: Alloimmunization to minor red blood cell (RBC) antigens occurs commonly in sickle cell disease (SCD). Patients with alloimmunization demonstrate increased risk for new alloantibody formation with subsequent transfusion. Alloimmunization to human leukocyte antigens (HLA) can occur with RBC transfusion and may result in graft rejection during stem cell or organ transplantation. The prevalence and risk factors for HLA alloimmunization in multiply transfused pediatric SCD patients are unknown. PROCEDURE: A cross-sectional study of HLA alloimmunization in SCD patients aged 3-21 years with a history of >or=3 RBC transfusions was performed to test the hypothesis that HLA alloimmunization is associated with RBC alloimmunization. Antibodies to class I and class II HLA were measured by Flow Panel Reactive Antibody (FlowPRA). RESULTS: Seventy-three SCD patients (30 with RBC antibodies) were tested. HLA antibodies were detected in 25/73 (34%) patients; class I HLA antibodies occurred in 24/73 (33%) and class II HLA antibodies occurred in 3 (4%). Among patients with RBC antibodies, 16/30 (53%) had HLA antibodies, while 9/43 (21%) patients without RBC antibodies had HLA antibodies (OR 4.32 [1.6-12.1]). In a multivariate analysis, antibodies to RBC antigens were an independent predictor of HLA alloimmunization (P = 0.041). The association of RBC and HLA immunization was strongest among patients with no history of chronic transfusion therapy. CONCLUSIONS: This analysis is the first description of HLA alloimmunization in pediatric SCD patients who receive primarily leukoreduced RBC transfusions and demonstrates that HLA alloimmunization tendency is associated with antibodies to RBC antigens.

Transfusion management of sickle cell patients during bone marrow transplantation with matched sibling donor.

BACKGROUND: Sickle cell disease (SCD) patients have unique transfusion considerations during bone marrow transplantation (BMT), including prophylaxis against stroke and alloimmunization. Characterization of transfusion requirements is important for blood bank and clinician patient management. STUDY DESIGN AND METHODS: A retrospective analysis of red blood cell (RBC) and platelet (PLT) transfusion of SCD patients during myeloablative matched sibling donor (MSD) BMT at one institution from 1993 to 2007 was performed. Patient characteristics (RBC blood group antibodies, ABO-incompatible donor, BMT-related morbidity) and transfusion practices (RBC phenotype matching, transfusion threshold, and blood age) were assessed for effect on total RBC transfusion volumes. RESULTS: Twenty-seven patients received MSD BMT with 96% survival and 0% rejection. Six alloimmunized patients received RBCs with extended phenotype matching (C, c, E, e, K, Fy(a), Jk(b)), 14 nonalloimmunized received limited matching (C, c, E, e, K), and 7 did not have phenotype matching. Among 26 survivors, a median seven RBC transfusions (range, 3-15) and 13.5 PLT transfusions (range, 4-48) per patient were administered, equivalent to 64 mL/kg RBCs (range, 22-122 mL/kg) and 106 mL/kg PLTs (range, 26-343 mL/kg). BMT-related morbidity predicted increased RBC transfusions (p = 0.006). Venoocclusive disease was associated with greater RBC (p = 0.016) and PLT transfusion volumes (p = 0.016). Greater phenotype matching was associated with decreased RBC transfusions (p = 0.0247). CONCLUSIONS: SCD patients have high transfusion support during MSD BMT. Communication of BMT complications to the blood bank is essential for transfusion inventory management. Phenotype matching decreased RBC transfusions in this cohort and warrants further investigation in SCD transfusion therapy.

Transition of patients with sickle cell disease from pediatric to adult care: Assessing patient readiness.

BACKGROUND: Transfer of care from pediatric to adult-oriented providers is challenging for adolescents with sickle cell disease (SCD). The need for transition programs is known, however many SCD patients leave pediatric care without adequate preparation. This study has two aims: to assess adolescent SCD patients' preparation for transition and to identify variables that predict patient readiness. PROCEDURE: Adolescent patients receiving care at a pediatric SCD center received a survey regarding essential steps of the transition process. Patients' level of prior thought, interest, anticipated difficulty, and perceived importance of transition were graded on a scale of 0 to 3. Knowledge of individual transition plans was scaled 0 to 4. Responses were analyzed according to age, sex, and disease severity. RESULTS: Seventy patients ages 14 to 20 years (median 16.7 years) were assessed. Mean readiness scores were low, with greatest deficiencies in prior thought (mean 0.88 [0.66-1.09]), knowledge (mean 0.85 [0.61-1.09]), anticipated difficulty (mean 1.42 [1.23-1.61]), and interest (mean 1.71 [1.47-1.95]). Perceived importance of transition received the highest score (mean 2.71 [2.58-2.84]). Younger age (or=3 crises/year) was associated with lower interest (P = 0.043) but greater anticipated difficulty (P = 0.001). Anticipated difficulty trended higher among females (P = 0.028). CONCLUSIONS: Adolescents with SCD acknowledge the importance but demonstrate poor preparation for transition to adult-oriented care. Readiness improves with age but remains insufficient. This analysis highlights the need for improvements in anticipatory guidance for transition during adolescence.

Menstruation across time: menarche, menstrual attitudes, experiences, and behaviors.

This study explored the relationship between early and current menstrual experiences. The primary hypothesis was that women who reported positive menarcheal experiences (including menstrual education and menarche) would tend to report positive current menstrual attitudes, experiences, and/or behaviors, and vice versa for women who reported negative menarcheal experiences. In this survey-based study, college-aged women (n = 327) were screened by completing a questionnaire concerning their menarcheal experiences. Women who had extremely negative ("negative group," n = 46) or extremely positive ("positive group," n = 38) early menstrual experiences returned to complete questionnaires concerning current menstrual attitudes, experiences, and behaviors. Early and current menstrual experiences were most strongly associated in the domain of menstrual attitudes. Women in the negative group reported more negative menstrual attitudes than did women in the positive group. There were additional associations between early menstrual experiences and measures of body image and health behaviors. Positive group participants reported more positive body image and better general health behaviors. Results suggest that early menstrual experiences may be related to menstrual experiences later in life. This study invites further investigation of the psychology of menstruation and suggests connecting menstruation with other women's health issues.

Acute effects of aerosolized S-nitrosoglutathione in cystic fibrosis.

S-nitrosoglutathione (GSNO), a naturally occurring constituent of airway lining fluid, enhances ciliary motility, relaxes airway smooth muscle, inhibits airway epithelial amiloride-sensitive sodium transport, and prevents pathogen replication. Remarkably, airway levels of GSNO are low in patients with cystic fibrosis (CF). We hypothesized that replacement of airway GSNO would improve gas exchange in CF. In a double-blind, placebo controlled study, we administered 0.05 ml/kg of 10 mM GSNO or phosphate buffered saline by aerosol to patients with CF and followed oxygen saturation, spirometry, respiratory rate, blood pressure, heart rate, and expired nitric oxide (NO). Nine patients received GSNO and 11 placebo. GSNO inhalation was associated with a modest but sustained increase in oxygen saturation at all time points. Expired NO increased in the low ppb range with GSNO treatment, peaking at 5 minutes but remaining above baseline at 30 minutes. There were no adverse effects. We conclude that GSNO is well tolerated in patients with CF and improves oxygenation through a mechanism that may be independent of free NO. Further, GSNO breakdown increases expired NO. We suggest that therapy aimed at restoring endogenous GSNO levels in the CF airway may merit study.