Real-world cohort study of adult and pediatric patients treated for hereditary angioedema in the United States.

There is limited real-world evidence on hereditary angioedema (HAE) patient characteristics and health-care resource utilization (HCRU); in addition, pediatric patients have been described in small cohorts. To describe patient characteristics, treatment patterns, and HCRU among adult and pediatric patients treated for HAE in a large U.S.

Informing real-world practice with real-world evidence: the value of PRECIS-2.

Real-world evidence is needed to inform real-world practice. Pragmatic controlled trials are intended to provide such evidence by assessing the effectiveness of medicines and other interventions in real-world settings, as opposed to explanatory trials that assess efficacy in highly controlled settings. Dal-Ré and colleagues (BMC Med 16:49, 2018) recently performed a literature review of studies published between 2014 and 2017 to assess the degree to which studies that self-identified as pragmatic were truly so.

Facilitative Components of Collaborative Learning: A Review of Nine Health Research Networks.

Objective: Collaborative research networks are increasingly used as an effective mechanism for accelerating knowledge transfer into policy and practice. This paper explored the characteristics and collaborative learning approaches of nine health research networks.

Data Sources/study Setting: Semi-structured interviews with representatives from eight diverse US health services research networks conducted between November 2012 and January 2013 and program evaluation data from a ninth.

Trials without tribulations: Minimizing the burden of pragmatic research on healthcare systems.

Pragmatic clinical trials are increasingly common because they have the potential to yield findings that are directly translatable to real-world healthcare settings. Pragmatic clinical trials need to integrate research into clinical workflow without placing an undue burden on the delivery system. This requires a research partnership between investigators and healthcare system representatives.

Promoting Patient and Family Partnerships in Ambulatory Care Improvement: A Narrative Review and Focus Group Findings.

Introduction: Ambulatory practices that actively partner with patients and families in quality improvement (QI) report benefits such as better patient/family interactions with physicians and staff, and patient empowerment. However, creating effective patient/family partnerships for ambulatory care improvement is not yet routine. The objective of this paper is to provide practices with concrete evidence about meaningfully involving patients and families in QI activities.

Use of PRECIS ratings in the National Institutes of Health (NIH) Health Care Systems Research Collaboratory.

Background: The National Institutes of Health (NIH) Health Care Systems Research Collaboratory (NIH Collaboratory) seeks to produce generalizable knowledge about the conduct of pragmatic research in health systems. This analysis applied the PRECIS-2 pragmatic trial criteria to five NIH Collaboratory pragmatic trials to better understand 1) the pragmatic aspects of the design and implementation of treatments delivered in real world settings and 2) the usability of the PRECIS-2 criteria for assessing pragmatic features across studies and across time.

Methods/design: Using the PRECIS-2 criteria, five pragmatic trials were each rated by eight raters.

Trends in elective labor induction for six United States health plans, 2001-2007.

Background: To describe trends in labor induction, including elective induction, from 2001 to 2007 for six U.S. health plans and to examine the validity of induction measures derived from birth certificate and health plan data.

Development of a facilitation curriculum to support primary care transformation: the "coach medical home" curriculum.

Background: In an effort to improve patient care, retain high-quality primary care providers, and control costs, primary care practices across the United States are transforming to patient-centered medical homes. This is no small task. Practice facilitation, also called "coaching," is increasingly being used to support system change; however, there is limited guidance for these programs.

Unlocking the black box: supporting practices to become patient-centered medical homes.

Background: Despite widespread interest in supporting primary care transformation, few evidence-based strategies for technical assistance exist. The Safety Net Medical Home Initiative (SNMHI) sought to develop a replicable and sustainable model for Patient-centered Medical Home practice transformation.

Objectives: This paper describes the multimodal technical assistance approach used by the SNMHI and the participating practices' assessment of its value and helpfulness in supporting their transformation.

A conceptual model of the role of complexity in the care of patients with multiple chronic conditions.

Background: Effective healthcare for people with multiple chronic conditions (MCC) is a US priority, but the inherent complexity makes both research and delivery of care particularly challenging. As part of AHRQ Multiple Chronic Conditions Research Network (MCCRN) efforts, the Network developed a conceptual model to guide research in this area.

Objective: To synthesize methodological and topical issues relevant to MCC patient care into a framework that can improve the delivery of care and advance future research about caring for patients with MCC.

How the provenance of electronic health record data matters for research: a case example using system mapping.

Introduction: The use of electronic health records (EHRs) for research is proceeding rapidly, driven by computational power, analytical techniques, and policy. However, EHR-based research is limited by the complexity of EHR data and a lack of understanding about data provenance, meaning the context under which the data were collected. This paper presents system flow mapping as a method to help researchers more fully understand the provenance of their EHR data as it relates to local workflow.

Methods of linking mothers and infants using health plan data for studies of pregnancy outcomes.

Purpose: Research on medication safety in pregnancy often utilizes health plan and birth certificate records. This study discusses methods used to link mothers with infants, a crucial step in such research.

Methods: We describe how eight sites participating in the Medication Exposure in Pregnancy Risk Evaluation Program created linkages between deliveries, infants and birth certificates for the 2001-2007 birth cohorts.

Validation of an algorithm to estimate gestational age in electronic health plan databases.

Purpose: To validate an algorithm that uses delivery date and diagnosis codes to define gestational age at birth in electronic health plan databases.

Methods: Using data from 225,384 live born deliveries to women aged 15-45 years in 2001-2007 within eight of the 11 health plans participating in the Medication Exposure in Pregnancy Risk Evaluation Program, we compared (1) the algorithm-derived gestational age versus the "gold-standard" gestational age obtained from the infant birth certificate file and (2) the prenatal exposure status of two antidepressants (fluoxetine and sertraline) and two antibiotics (amoxicillin and azithromycin) as determined by the algorithm-derived versus the gold-standard gestational age.

Results: The mean algorithm-derived gestational age at birth was lower than the mean obtained from the birth certificate file among singleton deliveries (267.

Interest in an online smoking cessation program and effective recruitment strategies: results from Project Quit.

Background: The Internet is a promising venue for delivering smoking cessation treatment, either as a stand-alone program or as an adjunct to pharmacotherapy. However, there is little data to indicate what percent of smokers are interested in receiving online smoking cessation services or how best to recruit smokers to Internet-based programs.

Objective: Using a defined recruitment sample, this study aimed to identify the percentage of smokers who expressed interest in or enrolled in Project Quit, a tailored, online, cognitive-behavioral support program offered with adjunctive nicotine replacement therapy patches.

The coordinated clinical studies network: a multidisciplinary alliance to facilitate research and improve care.

The NIH Roadmap is a major effort to reshape the US health research enterprise to accelerate medical discovery and to do so in such a way that actually hastens population health improvement through research. The Roadmap's ultimate goal resonates with the HMO Research Network, a consortium of integrated health care systems that uses its collective scientific capabilities to integrate research, practice, and policy for the improvement of health and health care among diverse populations. (See page 6 for abstracts from the HMO Research Network annual conference.

The migration of physicians from sub-Saharan Africa to the United States of America: measures of the African brain drain.

BACKGROUND: The objective of this paper is to describe the numbers, characteristics, and trends in the migration to the United States of physicians trained in sub-Saharan Africa. METHODS: We used the American Medical Association 2002 Masterfile to identify and describe physicians who received their medical training in sub-Saharan Africa and are currently practicing in the USA. RESULTS: More than 23% of America's 771 491 physicians received their medical training outside the USA, the majority (64%) in low-income or lower middle-income countries.

Developing local public health capacity in cultural competency: a case study with Haitians in a rural community.

With the increase in cultural diversity in all regions of the United States, public health employees and other health care providers are more challenged than ever before to provide culturally sensitive care to citizens from an increasing range of cultures. Building on their existing experience and skill, health care staff must expand their competencies to address this changing diversity in their communities. This project serves as a case study of how 1 small rural health department in Delaware created a Web site using Purnell's model for cultural competence (Purnell & Paulanka, 2003) as the organizational framework and rose to the challenge of assisting public health staff to provide culturally sensitive health services to a rapidly increasing population of Haitian immigrants.

Gender-related factors in the recruitment of physicians to the rural Northwest.

Background: This study examines differences in the factors female and male physicians considered influential in their rural practice location choice and describes the practice arrangements that successfully recruited female physicians to rural areas.

Methods: This cross-sectional study was based on a mailed survey of physicians successfully recruited between 1992 and 1999 to towns of 10,000 or less in six states in the Pacific Northwest.

Results: Responses from 77 men and 37 women (response rate 61%) indicated that women were more likely than men to have been influenced in making their practice choice by issues related to spouse or personal partner, flexible scheduling, family leave, availability of childcare, and the interpersonal aspects of recruitment.