Leveraging Evidence-Based Public Policy and Advocacy to Advance Newborn Screening in California.

In 2016, the EveryLife Foundation for Rare Diseases, in partnership with Dr Pan, who is a pediatrician and state senator in California, launched legislation to advance and expand newborn screening. Researchers have shown that newborn screening can be cost-effective and can greatly improve health outcomes for patients with rare diseases. However, adding additional diseases in newborn screening is a long process, requiring legislative approval in addition to new state funding. Such process delays can lead to protracted diagnostic odysseys for patients, especially those with rare diseases. These delays can result in irreversible morbidity and, in some cases, early mortality for patients. To improve this process, legislation known as Senate Bill 1095 was introduced to require California to adhere to the latest federal recommendations for newborn screening within 2 years. We provide insight and describe the process of advancing state legislation, coalition building, and managing opposition. Senate Bill 1095 would become law in 2016, requiring California to screen for 2 new rare diseases by August 2018: mucopolysaccharidosis type I and Pompe disease. This case study can serve as a model for advocates looking to expand state newborn-screening programs.

Evolving Federal and State Health Care Policy: Toward a More Integrated and Comprehensive Care-Delivery System for Children With Medical Complexity.

Irrespective of any future changes in federal health policy, the momentum to shift from fee-for-service to value-based payment systems is likely to persist. Public and private payers continue to move toward alternative payment models that promote novel care-delivery systems and greater accountability for health outcomes. With a focus on population health, patient-centered medical homes, and care coordination, alternative payment models hold the potential to promote care-delivery systems that address the unique needs of children with medical complexity (CMC), including nonmedical needs and the social determinants of health. Notwithstanding, the implementation of care systems with meaningful quality measures for CMC poses unique and substantive challenges. Stakeholders must view policy options for CMC in the context of transformation within the overall health system to understand how broader health system changes impact care delivery for CMC.

Attributes affecting the medical school primary care experience.

PURPOSE: Favorable primary care (PC) experiences might encourage more medical students to pursue generalist careers, yet academicians know little about which attributes influence the medical school PC experience. The authors sought to identify such attributes and weight their importance. METHOD: Semistructured interviews with 16 academic generalist leaders of family medicine, general internal medicine, and general pediatrics led to the development of a Web-based survey, administered to a national sample of 126 generalist faculty. Survey respondents rated (on a nine-point Likert-like scale) the importance of each interview-generated PC medical school attribute and indicated (yes/no) whether outside experts' assessment of the attributes would be valid. The authors assessed interrater agreement. RESULTS: Interview thematic analysis generated 58 institutional attributes in four categories: informal curriculum (23), institutional infrastructure (6), educational/curricular infrastructure (6), and specific educational experiences (23). Of these 58, 31 (53%) had median importance ratings of >7 (highly important). For 14 of these (45%), more than two-thirds of respondents indicated external expert surveys would provide a valid assessment. Of the 23 informal curriculum attributes, 20 (87%) received highly important ratings; however, more than two-thirds of respondents believed that external expert survey ratings would be valid for only 4 (20%) of them. Strong agreement occurred among respondents across the generalist fields. CONCLUSIONS: Academic generalist educators identified several attributes as highly important in shaping the quality of the medical school PC experience. Informal curriculum attributes appeared particularly influential, but these attributes may not be validly assessed via expert surveys, suggesting the need for other measures.

Community-based advocacy training: applying asset-based community development in resident education.

Communities and Physicians Together (CPT) at University of California, Davis Health System provides a novel approach to teaching residents to be effective community advocates. Founded in 1999, CPT is a partnership between a pediatric residency program, five community collaboratives located in diverse neighborhoods, and a grassroots child advocacy organization. Using the principles of Asset-Based Community Development, the program emphasizes establishing partnerships with community members and organizations to improve child health and identifies community assets and building capacity. Community members function as the primary faculty for CPT.The authors describe the CPT curriculum, which teaches residents to build partnerships with their assigned community. Residents have three, two-week blocks each year for CPT activities and maintain a longitudinal relationship with their community. In the first year, collaborative coordinators from each community orient residents to their community. Residents identify community assets and perform activities designed to provide them with a community member's perspective. In the second and third years, residents partner with community members and organizations to implement a project to improve the health of children in that community. CPT also provides faculty development to community partners including a workshop on medical culture and resident life. A qualitative evaluation demonstrated residents' attitudes of their role as pediatricians in the community changed with CPT.CPT is unique because it provides a model of service learning that emphasizes identifying and utilizing strengths and building capacity. This approach differs from the traditional medical model, which emphasizes deficits and needs.

Financing graduate medical education to meet the needs of children and the future pediatrician workforce.

This policy statement articulates the positions of the American Academy of Pediatrics on graduate medical education and the associated costs and funding mechanisms. It reaffirms the policy of the American Academy of Pediatrics that graduate medical education is a public good and is an essential part of maintaining a high-quality physician workforce. The American Academy of Pediatrics advocates for lifelong learning across the continuum of medical education. This policy statement focuses on the financing of one component of this continuum, namely residency education. The statement calls on federal and state governments to continue their support of residency education and advocates for stable means of funding such as the establishment of an all-payer graduate medical education trust fund. It further proposes a portable authorization system that would allocate graduate medical education funds for direct medical education costs to accredited residency programs on the basis of the selection of the program by qualified student or residents. This system allows the funding to follow the residents to their program. Recognizing the critical workforce needs of many pediatric medical subspecialties, pediatric surgical specialties, and other pediatric specialty disciplines, this statement maintains that subspecialty fellowship training and general pediatrics research fellowship training should receive adequate support from the graduate medical education financing system, including funding from the National Institutes of Health and other federal agencies, as appropriate. Furthermore, residency education that is provided in freestanding children's hospitals should receive a level of support equivalent to that of other teaching hospitals. The financing of graduate medical education is an important and effective tool to ensure that the future pediatrician workforce can provide optimal heath care for infants, children, adolescents, and young adults.

A school-based approach to early identification and management of students with ADHD.

Attention-deficit/hyperactivity disorder (ADHD) is one of the most challenging chronic conditions for children, families, schools, and physicians. Because symptoms of ADHD can be mistaken for other health conditions and misdiagnosis can occur, accurate diagnosis and treatment require comprehensive evaluation. This article introduces a school-based framework- ADHD Identification and Management in Schools (AIMS)-developed by a multidisciplinary team composed of a pediatrician, school nurses, and school psychologists that sought to improve communication between school personnel and physicians, standardize practice, and improve the quality of care for children with ADHD. The framework provides school nurses with an evidence-based, systematic method for early identification and management of children with ADHD.

Pediatric residency duty hours before and after limitations.

OBJECTIVES: The goals were to examine pediatric resident and program director experiences implementing the Accreditation Council for Graduate Medical Education work hour limits and to compare duty hours, moonlighting, and fatigue before and after the limits became effective. METHODS: National random samples of 500 pediatric residents who graduated in 2002 and in 2004 were surveyed to compare resident duty hours and fatigue before and after the Accreditation Council for Graduate Medical Education limits were implemented. In addition, all US pediatric residency program directors were surveyed at the end of the 2003/2004 academic year, to provide a complementary retrospective examination of limit implementation. RESULTS: Totals of 65%, 61%, and 83% of 2002 residents, 2004 residents, and program directors, respectively, responded. The proportion of residents who reported working >80 hours per week declined from 49% for NICU/PICU rotations before the limits to 18% after limit implementation. Resident well-being was the factor identified most often by both residents and program directors as being improved since the limitations. Multivariate modeling also showed reductions in the proportions of residents who reported falling asleep while driving from work or making errors in patient care because of fatigue. Overall, 89% of pediatric residents and program directors reported that the current system is effective in ensuring appropriate working hours. CONCLUSIONS: Since the Accreditation Council for Graduate Medical Education duty hour limits went into effect, pediatric residents report working fewer hours and making fewer patient care errors because of fatigue. Although room for additional improvement remains, the experiences of residents and program directors suggest that implementation of the Accreditation Council for Graduate Medical Education limits in pediatric residency programs is improving resident well-being.

Pediatric residents' perceptions of community involvement prior to residency.

OBJECTIVES: To describe baseline perceptions of first-year pediatric residents of participating in community activities, to determine whether demographic factors are related to perceived benefits and constraints, and to identify factors associated with expected community involvement. METHODS: Pediatric residents beginning their training in the fall of 2000 to 2003 participated in a 12-item self-administered written survey as part of the national evaluation of the Dyson Community Pediatrics Training Initiative. RESULTS: Of the 612 first-year residents surveyed (90% response rate), most reported they receive personal satisfaction (92%) and gain valuable skills and knowledge (83%) from their involvement in community activities. Less than a quarter felt peer support and professional recognition were benefits. Almost two thirds reported logistics and lost personal time as constraints to community involvement. Compared with their colleagues, older residents (> 29 years) and underrepresented minority residents reported fewer constraints. Most residents (72%) expect moderate to substantial involvement in community activities after graduating. Those expecting greater involvement were more likely to report personal satisfaction, gaining valuable skills and knowledge, peer support, and the opportunity to spend time with like-minded peers as benefits. CONCLUSIONS: Pediatric residents beginning their postgraduate training perceive numerous benefits from their participation in community activities and most expect a moderate degree of future community involvement. Residency directors should: 1) consider their trainees' insights from prior community involvement and 2) integrate meaningful community experiences in ways that confront logistic barriers and time constraints.

From physician-centered to community-oriented perspectives on health care: assessing the efficacy of community-based training.

PURPOSE: To understand the influence of a community-based child advocacy block rotation on the perspectives of first-year pediatric residents and whether this influence persists. METHOD: The authors conducted semistructured interviews to assess the impact of the training program on pediatrics residents' perspectives regarding child advocacy and their understanding of the role of the community members and community-based assets in child advocacy. Three cohorts of first-year residents at the University of California, Davis, participated in the two-week community collaborative rotation from 2000 03. Two cohorts of 23 first-year residents were interviewed. In 2003, the first cohort of nine third-year residents was re-interviewed to assess long-term impact. Interviews were conducted before and after residents' experiences with community collaboratives. Transcripts of interviews were reviewed using an iterative process, and a coding system was applied using a qualitative software program. RESULTS: Comparison of pre- and postrotation interview data showed that residents' conceptions of advocacy shifted from ideas about being a pediatrician for the community to being a pediatrician in the community. This change in definition reflected a view of the pediatrician as facilitator, a community asset, rather than as a central administrator of child health affairs. This shift persisted through the completion of residency. CONCLUSIONS: These findings suggest that substantive interaction in a community collaborative can provide a starting point for residents to reconceptualize their role as pediatrician, for understanding the diverse contexts characteristic of children's circumstances, and for identifying and using community-based assets for improving child health. Definition changes persisted through residency and may influence residents' future behavior in clinical practice.

Building healthier communities for children and families: applying asset-based community development to community pediatrics.

Social capital is the power of social networks and relationships, which constitute the social environment. Social capital has been associated with many measures of health and development. Asset-based community development (ABCD) provides a framework to increase social capital and build stronger, healthier communities for children. ABCD is a strength-based approach to community building that emphasizes bringing together community assets including individual community members, voluntary associations, and institutions. How pediatricians can apply ABCD to child health is described.

Research exposure during pediatric residency: influence on career expectations.

OBJECTIVES: To examine pediatric residents' research experiences during residency and to explore whether residents' attitudes toward research are related to their decision to pursue subspecialty fellowships. STUDY DESIGN: A national random sample of 500 PL-3 pediatric residents completing training in 2001 was surveyed. Responses were obtained from 318 residents (64%). Resident research experiences and perceived competence were compared for residents planning to pursue subspecialty training (34%) and residents who were not (66%). RESULTS: Residents interested in a subspecialty were more likely to have had formal research training (39% vs 27%) and to have assisted on a research project (26% vs 14%) during residency. Upon residency completion, residents in both groups rated their knowledge of most research skills as being fair or poor. A favorable rating toward research was the strongest predictor of whether residents have subspecialty rather than general pediatrics as their future clinical goal (OR=3.7). CONCLUSIONS: Given residents' limited research exposure and the strong association found between residents' research attitudes and their plans to pursue subspecialty training, serious consideration should be given to the possible benefits of research promotion programs, which may lead to increased resident interest in pediatric fellowships and pediatric research.

Pediatric training and job market trends: results from the American Academy of Pediatrics third-year resident survey, 1997-2002.

OBJECTIVES: To examine trends in pediatric residents' training and job search experiences from 1997-2002. METHODS: Annual national random samples of 500 graduating pediatric residents were surveyed, and responses were compared across survey years to identify trends. The overall response rate was 71%. RESULTS: From 1997-2002, there were more female residents and US underrepresented minorities and fewer international medical graduates. Each successive group of residents rated higher their preparation for fellowship training, for child advocacy, and for assessing community needs. These increases paralleled an increase in resident exposure to community sites as part of their residency education. Educational debt (in 2002 dollars) for residents increased substantially across survey years from an average of 64 070 dollars in 1997 to 87 539 dollars in 2002. Meanwhile, starting salaries (in 2002 dollars) for residents entering general pediatrics actually decreased. Interest in general pediatrics among residents decreased, whereas interest in subspecialty practice increased during this time period. Fewer residents with general pediatrics as a career goal had a job when surveyed, and fewer obtained their first-choice positions across years. CONCLUSIONS: Experiences of graduating residents over the past 6 years provide insights into changes in pediatric residency education and the pediatric workforce. Efforts by pediatric educators and academic leaders to increase community experiences and child advocacy and to encourage greater interest in pediatric subspecialty careers seem to be succeeding. Unfortunately, demand for general pediatricians is weakening, and residents are experiencing increasing debt burdens.

The practice of clinical genetics: a survey of practitioners.

PURPOSE: A survey of clinical geneticists was undertaken to learn more about current practice. METHODS: An attempt was made to survey all geneticists practicing in the United States to elicit information on a variety of issues. RESULTS: A total of 69% of geneticists responded. Most practice at a medical school, most receive a portion of their income from salary, and many receive personal financial support from research grants. CONCLUSION: The specialty of medical genetics is primarily housed in tertiary care settings. Although a substantial amount of time is required to see patients, reimbursement for these services does not cover the costs to maintain such practices.

Pediatric residents' career intentions: data from the leading edge of the pediatrician workforce.

OBJECTIVE: To determine factors influencing career choices by pediatric residents and how they may change the future pediatric physician workforce. BACKGROUND: Societal norms and policy decisions can influence the demographics of residents entering pediatric practice and resident career choices. Although predictors of physician career choice have been identified retrospectively by examining the characteristics of physicians in practice, little work has focused on the job selection factors important to pediatric residents when they make their postresidency career decisions. DESIGN/METHODS: For 3 consecutive years (1997-1999), the American Academy of Pediatrics surveyed a national sample of 500 third-year residents, totaling 1500 residents. Data on resident characteristics, job selection attitudes, and career decisions were obtained, and trends for the past 3 years were examined. RESULTS: The percentage of residents intending to practice primary care remained constant at around 69% from 1997 through 1999. Female residents, US medical graduates, and residents married to nonphysicians were more likely to report primary care practice as their future clinical goal. These relationships were mediated by higher rates of a primary care practice goal among those who felt geographic location and future colleagues were very important and by lower rates among those who felt acceptable income, teaching opportunities, and research opportunities were very important. Six percent of residents entering general pediatrics were heading to rural locations. CONCLUSIONS: With a projected increase in the number of female pediatricians and a decline in international medical graduates, our study suggests that pediatrics may continue to shift toward an increased proportion of general pediatricians. Lifestyle issues are a major factor influencing job choice and must be addressed.