Inclusion Wheel: Tool for Building Capacity and Public Health Leaders to Serve People With Disabilities.

Public health leaders need to influence change to serve underserved populations, such as people who have a disability. Action research was conducted with a community of practice (CoP) from Ohio to examine readiness, capacity building, and capacity factors needed for public health partners to more fully include people who have a disability (PWD) in state smoking cessation efforts. Five conditions fostered readiness, capacity building, and capacity among public health partners to include PWD: (1) successful timing of effort, (2) facilitation of discussions, (3) systematic reflection, (4) sufficient support, and (5) personal commitment of participants. Nine factors of readiness, capacity building, and capacity influenced inclusion of PWD: (1) positive perception and quality interactions with partners, (2) contact with organizations, (3) recognition of need to coordinate, (4) engagement in a network, (5) practical collaboration experience, (6) continuing education, (7), critical reflection time, (8) dedicated staff, and (9) knowledge of priority population. Readiness, capacity, and capacity building were interconnected and supported inclusion of PWD in public health efforts. Ohio public health partners used these factors and conditions to achieve the first mandatory disability awareness training for all National Jewish Health Quitline counselors. Future efforts addressing other specific demographic groups that experience health disparities can use these findings.

Public Health Practice of Population-Based Birth Defects Surveillance Programs in the United States.

CONTEXT: Birth defects remain a leading cause of infant mortality in the United States and contribute substantially to health care costs and lifelong disabilities. State population-based surveillance systems have been established to monitor birth defects, yet no recent systematic examination of their efforts in the United States has been conducted. OBJECTIVE: To understand the current population-based birth defects surveillance practices in the United States. DESIGN: The National Birth Defects Prevention Network conducted a survey of US population-based birth defects activities that included questions about operational status, case ascertainment methodology, program infrastructure, data collection and utilization, as well as priorities and challenges for surveillance programs. Birth defects contacts in the United States, including District of Columbia and Puerto Rico, received the survey via e-mail; follow-up reminders via e-mails and telephone were used to ensure a 100% response rate. RESULTS: Forty-three states perform population-based surveillance for birth defects, covering approximately 80% of the live births in the United States. Seventeen primarily use an active case-finding approach and 26 use a passive case-finding approach. These programs all monitor major structural malformations; however, passive case-finding programs more often monitor a broader list of conditions, including developmental conditions and newborn screening conditions. Active case-finding programs more often use clinical reviewers, cover broader pregnancy outcomes, and collect more extensive information, such as family history. More than half of the programs (24 of 43) reported an ability to conduct follow-up studies of children with birth defects. CONCLUSIONS: The breadth and depth of information collected at a population level by birth defects surveillance programs in the United States serve as an important data source to guide public health action. Collaborative efforts at the state and national levels can help harmonize data collection and increase utility of birth defects programs.

The University of Illinois at Chicago School of Public Health Doctor of Public Health program: an innovative approach to doctoral-level practice leadership development.

The University of Illinois at Chicago, School of Public Health, Doctor of Public Health degree is designed to build leadership skills and an ability to contribute to the evidence base of practice. The competency-based, distance-format, doctoral-level program for midcareer professionals features an action learning approach in which students apply leadership principles from the virtual classroom to real-world problems at their work sites. Students demonstrate mastery of the competencies and readiness to advance to the dissertation stage through completing a portfolio by using a process of systematic reflection. The practice-oriented dissertation demonstrates the ability to contribute to the evidence base of public health practice in an area of emphasis. Preliminary evaluation data indicate that the program is meeting its intended purposes.

Storage and use of Newborn Screening Blood Specimens for Research: Assessing Public Opinion in Illinois.

Storage and use of residual dried blood spots (DBS) from newborn screening (NBS) for research purposes has been a topic of elevated interest following high profile disputes between genetic privacy advocacy groups and state NBS programs. Our objective was to assess public opinion in Illinois regarding storage and use of residual DBS for research. Five hundred twenty-six Illinois residents completed a survey assessing attitudes about research uses for DBS, storage length, and consent issues. Over 80 % of respondents expressed agreement with questions regarding research uses of DBS. Eighty-three percent of respondents were in favor of storage for at least one year with 44 % favoring indefinite storage. Respondents with higher educational attainment were more likely to support research use of DBS and less likely to desire contact for each future study (P < 0.05). Black respondents were less likely than white respondents to express agreement for the use of DBS for research or to favor long-term storage (P < 0.05). Support was high for storage and use of DBS in our sample. Consent was important and respondents wanted choices about participation. Forty-two percent of respondents were not aware of NBS prior to this survey, highlighting a need for greater education about this public health program. Trust in the public health service of NBS must be protected through transparency in the policy process.

Revisiting the Wilson-Jungner criteria: how can supplemental criteria guide public health in the era of genetic screening?

PURPOSE: Advances in technology have made newborn screening for more than 50 inborn errors of metabolism possible using a dried blood sample. A framework is proposed that public health practitioners may use when considering candidate disorders for newborn screening panels. METHODS: The framework expands on the 10 Wilson-Jungner criteria with the addition of 11 criteria specific to newborn screening. A calculation, the "pNBS Decision Score," is used to quantify results and rank candidate disorders. RESULTS: The pNBS Decision Scores that were calculated for phenylketonuria (OMIM# 261600), cystic fibrosis (OMIM# 219700), Pompe disease (OMIM# 232300), and severe combined immunodeficiency (OMIM# 102700) support their inclusion as newborn screening disorders. The pNBS Decision Score suggests that Krabbe disease (OMIM# 245200) is not a candidate disorder for inclusion at this time. CONCLUSION: The proposed framework adds to the ability of policy makers to quantify an essential portion of the process for adding disorders to newborn screening panels. Other factors such as ethical, legal, and social issues, clinical utility, and advocacy are also part of the policy process. The framework is not intended to replace existing nomination processes but rather to enhance those processes by encouraging iterative review of newborn screening-specific criteria. The use of the framework will provide consistency across a portion of the decision process. The public health community should take the opportunity to revisit the screening determinants of the Wilson-Jungner criteria from a 21st century perspective. The results suggest that this framework provides the public health practitioner with a consistent process for making an evidence-based decision.

Exploratory Case Study of Barriers and Facilitators Associated With the Pilot Implementation of a New Electronic Healthcare Record in the Military.

INTRODUCTION: The Military Health System (MHS) overhauled its previous Electronic Health Records (EHRs) system. The MHS is in need of modernizing its healthcare system to improve patient safety and coordination of care between the MHS and Veterans Affairs. In 2015, the DoD awarded Cerner, Leidos, and Accenture a $4.3 billion EHR contract for a commercialized off-the-shelf system model to be used by more than 146,000 end users. This exploratory case study looked to access socio-technical barriers and facilitators to EHR implementation specifically in the military. MATERIALS AND METHODS: A document review served as the data source: implementation plans, evaluation reports, congressional reports, news articles, and relevant peer-reviewed literature. A series of a priori codes were developed, and emergent codes arose out of the thematic analysis process. RESULTS: There were several constructs that emerged from the analysis, placing emphasis on the uniqueness of EHR implementation in the MHS. The constructs of people, communication, and hardware and technical factors were strongly tied to EHR implementation. Additionally, medical readiness was identified in the analysis as a unique factor specific to the EHR implementation in the MHS. CONCLUSION: This research identified three strategic recommendations for the MHS to consider: hire clinical informaticists, parallel EHR implementation, and enhance EHR training. This research also informed a Socio-Technical Leadership Framework for EHR Implementation to guide MHS leaders during health information technology implementation. Although significant health information technology changes may occur only once every few years, having issues during implementation impacts mission success, overall threatening the vital role that the MHS provides to national defense.

Revisiting the Wilson-Jungner criteria: How can supplemental criteria guide public health in the era of genetic screening?

PURPOSE:: Advances in technology have made newborn screening for more than 50 inborn errors of metabolism possible using a dried blood sample. A framework is proposed that public health practitioners may use when considering candidate disorders for newborn screening panels. METHODS:: The framework expands on the 10 Wilson-Jungner criteria with the addition of 11 criteria specific to newborn screening. A calculation, the "pNBS Decision Score," is used to quantify results and rank candidate disorders. RESULTS:: The pNBS Decision Scores that were calculated for phenylketonuria (OMIM# 261600), cystic fibrosis (OMIM# 219700), Pompe disease (OMIM# 232300), and severe combined immunodeficiency (OMIM# 102700) support their inclusion as newborn screening disorders. The pNBS Decision Score suggests that Krabbe disease (OMIM# 245200) is not a candidate disorder for inclusion at this time. CONCLUSION:: The proposed framework adds to the ability of policy makers to quantify an essential portion of the process for adding disorders to newborn screening panels. Other factors such as ethical, legal, and social issues, clinical utility, and advocacy are also part of the policy process. The framework is not intended to replace existing nomination processes but rather to enhance those processes by encouraging iterative review of newborn screening-specific criteria. The use of the framework will provide consistency across a portion of the decision process. The public health community should take the opportunity to revisit the screening determinants of the Wilson-Jungner criteria from a 21st century perspective. The results suggest that this framework provides the public health practitioner with a consistent process for making an evidence-based decision.

Simple Test, Complex System: Multifaceted Views of Newborn Screening Science, Technology, and Policy.

Newborn screening (NBS) is a public health service provided for all babies born in the United States and in most countries of the developed world. A series of tests are applied to the blood taken from newborn babies to detect genetic and metabolic disorders that can be treated if identified early. With early treatment and therapy, the affected babies can usually live a normal, healthy life. Timing for sampling, testing, and reporting is vital for NBS to function as an effective system. In order to be an effective system, the evolution of science, technology, and policy gradually had to come into a synchronous partnership, where the discovery of new genetic disorders led to timely development of technology for screening, which is supported by policy and implemented into practice. The timely "dance" of these partnerships in an era of personalized health and medicine forms the integrated approach supporting NBS. This review will include a brief history of scientific development, policymaking, and the economic consideration in the expansion of the NBS.

Prioritizing Workforce Development Training in State Health Departments Using TRAIN: Challenges and Opportunities.

OBJECTIVE: The objectives of this study were (1) to obtain data on the current status of public health workforce training and the use of the Training Finder Real-Time Affiliate Network (TRAIN), a public health learning management platform, in state health departments, and (2) to use the data to identify organizational features that might be affecting training and to determine barriers to and opportunities for improving training. METHODS: We conducted structured interviews in 2014 with TRAIN administrators and performance improvement managers (n = 14) from 7 state health departments that were using TRAIN to determine training practices and barriers to training. We determined key organizational features of the 7 agencies, including training structure, required training, TRAIN administrators' employment status (full time or part time), barriers to the use and tracking of core competencies in TRAIN, training needs assessment methods, leadership support of training and staff development, and agency interest in applying for Public Health Accreditation Board accreditation. RESULTS: We identified 4 common elements among TRAIN-affiliated state health departments: (1) underuse of TRAIN as a training tool, (2) inadequate ownership of training within the organization, (3) insufficient valuation of and budgeting for training, and (4) emerging collaboration and changing perceptions about training stimulated by agency preparation for accreditation. CONCLUSIONS: Public health leaders can increase buy-in to the importance of training by giving responsibility for training to a person, centralizing training, and setting expectations for the newly responsible training leader to update training policy and require the use of TRAIN to develop, implement, evaluate, monitor, and report on agency-wide training.

Draft Opioid-Prescribing Guidelines for Uncomplicated Normal Spontaneous Vaginal Birth.

Women who experience an uncomplicated vaginal delivery have acute intrapartum pain and variable pain in the immediate postpartum period. Although the Centers for Disease Control and Prevention (CDC) has urged clinicians to improve opioid-prescribing behavior, there are no published clinical practice guidelines for prescribing opioids during labor and delivery and at discharge for patients with uncomplicated normal spontaneous vaginal delivery. To address the knowledge gap regarding guidelines for pain management in this population, we used the national Premiere Health Care Database for deliveries of uncomplicated vaginal births from January 1, 2014, to December 31, 2016, to determine the prevalence of opioid administration. Among the 49,133 women who met inclusion criteria, 78.2% were administered opioids during hospitalization and 29.8% were administered opioids on the day of discharge. Descriptive statistics were generated to document the characteristics of the patients receiving opioids as well as the characteristics of hospitals administering opioids during inpatient labor and delivery and on discharge. Patient-level variables included age group, marital status, race, ethnicity, payer type, and length of stay. Hospital-level variables included bed size, geographic region, teaching status, and urbanicity status. These data were then presented in an electronic Delphi survey to 14 participants. The survey participants were obstetrician-gynecologists identified by the American College of Obstetricians and Gynecologists as being thought leaders in the obstetrics field and who had also demonstrated an active interest in the opioid epidemic and its effect on women's health. After the panelists viewed the opioid administration data, they were presented with an adapted version of the CDC's guidelines for opioid prescribing for chronic pain management. The eight adapted guidelines were constructed to be more relevant and appropriate for the inpatient normal spontaneous vaginal delivery population. After three rounds of the surveying process, seven of the eight adapted guidelines were endorsed by the survey participants. These seven draft consensus guidelines could now be used as a starting point to develop more broadly endorsed and studied guidelines for appropriately managing pain control for women with uncomplicated spontaneous vaginal birth.

Biobank participant support of newborn screening for disorders with variable treatment and intervention options.

We aimed to better understand biobank participant opinions of the benefits of newborn screening (NBS) for certain disorder types and how terminology used in NBS discourse might impact stakeholder opinion. We conducted a between-subjects randomized survey of 5840 members of the Northwestern University Biobank. The survey contained 12 scenarios, each describing a disorder and its treatment. For each scenario, we varied the terminology used to describe treatment options. One survey version used the term intervention and the other treatment. The outcome measured for each scenario was perceived benefit (for the infant) and importance of testing (for participants). Comparisons were made between participants and between scenarios. Ratings of benefit and importance were not influenced by the use of the term intervention versus treatment within scenarios. Nuances existed in ratings of benefit to the infant and importance to participants amongst scenarios. Participants were most likely to perceive benefit and importance in screening for a disorder if treatment/intervention offered a high chance of improved outcomes. While participants perceived benefit to the infant and importance to themselves in screening for most disorders, nuances in inter-scenario ratings suggest participants weighed availability and type of treatment/intervention in consideration of the benefits of NBS.

Assessing the Practices of Population-Based Birth Defects Surveillance Programs Using the CDC Strategic Framework, 2012.

OBJECTIVE: We assessed the practices of U.S. population-based birth defects surveillance programs in addressing current and emergent public health needs. METHODS: Using the CDC Strategic Framework considerations for public health surveillance (i.e., lexicon and standards, legal authority, technological advances, workforce, and analytic capacity), during 2012 and 2013, we conducted a survey of all U.S. operational birth defects programs (n=43) soliciting information on legal authorities, case definition and clinical information collected, types of data sources, and workforce staffing. In addition, we conducted semi-structured interviews with nine program directors to further understand how programs are addressing current and emergent needs. RESULTS: Three-quarters of birth defects surveillance programs used national guidelines for case definition. Most birth defects surveillance programs (86%) had a legislative mandate to conduct surveillance, and many relied on a range of prenatal, postnatal, public health, and pediatric data sources for case ascertainment. Programs reported that the transition from paper to electronic formats was altering the information collected, offering an opportunity for remote access to improve timeliness for case review and verification. Programs also reported the growth of pooled, multistate data collaborations as a positive development. Needs identified included ongoing workforce development to improve information technology and analytic skills, more emphasis on data utility and birth defects-specific standards for health information exchange, and support to develop channels for sharing ideas on data interpretation and dissemination. CONCLUSION: The CDC Strategic Framework provided a useful tool to determine the birth defects surveillance areas with positive developments, such as multi-state collaborative epidemiologic studies, and areas for improvement, such as preparation for health information exchanges and workforce database and analytic skills. Our findings may inform strategic deliberations for enhancing the effectiveness of birth defects surveillance programs.