Road to the Future: Priorities for Child Health Services Research.

BACKGROUND: Prior health services research (HSR) agendas for children have been published, but major ones are now over 15 years old and do not reflect augmented understanding of the drivers and determinants of children's health; recent changes in the organization, financing, and delivery of health care; a growing emphasis on population health; and major demographic shifts in the population. A policy-relevant research agenda that integrates knowledge gained over the past 2 decades is essential to guide future child HSR (CHSR). We sought to develop and disseminate a robust, domestically focused, policy-oriented CHSR agenda. METHODS: The new CHSR agenda was developed through a series of consultations with leaders in CHSR and related fields. After each round of consultation, the authors synthesized the previous experts' guidance to help inform subsequent discussions. The multistep process in generation of the agenda included identification of major policy-relevant research domains and specification of high-value research questions for each domain. Stakeholders represented in the discussions included those with expertise in child and family advocacy, adult health, population health, community development, racial and ethnic disparities, women's health, health economics, and government research funders and programs. RESULTS: In total, 180 individuals were consulted in developing the research agenda. Six priority domains were identified for future research, including both enduring and emerging emphases: 1) framing children's health issues so that they are compelling to policy-makers; 2) addressing poverty and other social determinants of child health and wellbeing; 3) promoting equity in population health and health care; 4) preventing, diagnosing, and treating high priority health conditions in children; 5) strengthening performance of the health care system; and 6) enhancing the CHSR enterprise. Within these 6 domains, 40 specific topics were identified as the most pertinent for future research. Three overarching and crosscutting themes that affect research across the domains were also noted: the need for syntheses to build on the current, and sometimes extensive, evidence base to avoid duplication; the interrelated nature of the domains, which could lead to synergies in research; and the need for multidisciplinary collaborations in conducting research because research studies will look beyond the health sector. CONCLUSIONS: The priorities presented in the agenda are policy-oriented and include a greater emphasis on how findings are framed and communicated to support action. We expect that the agenda will be useful for immediate uptake by investigators and research funders.

A Framework for Classification of Electronic Health Data Extraction-Transformation-Loading Challenges in Data Network Participation.

BACKGROUND: Contributing health data to national, regional, and local networks or registries requires data stored in local systems with local structures and codes to be extracted, transformed, and loaded into a standard format called a Common Data Model (CDM). These processes called Extract, Transform, Load (ETL) require data partners or contributors to invest in costly technical resources with specialized skills in data models, terminologies, and programming. Given the wide range of tasks, skills, and technologies required to transform data into a CDM, a classification of ETL challenges can help identify needed resources, which in turn may encourage data partners with less-technical capabilities to participate in data-sharing networks. METHODS: We conducted key-informant interviews with data partner representatives to survey the ETL challenges faced in clinical data research networks (CDRNs) and registries. A list of ETL challenges, organized into six themes was vetted during a one-day workshop with a wide range of network stakeholders including data partners, researchers, and policy experts. RESULTS: We identified 24 technical ETL challenges related to the data sharing process. All of these ETL challenges were rated as "important" or "very important" by workshop participants using a five point Likert scale. Based on these findings, a framework for categorizing ETL challenges according to ETL phases, themes, and levels of data network participation was developed. CONCLUSIONS: Overcoming ETL technical challenges require significant investments in a broad array of information technologies and human resources. Identifying these technical obstacles can inform optimal resource allocation to minimize the barriers and cost of entry for new data partners into extant networks, which in turn can expand data networks' inclusiveness and diversity. This paper offers pertinent information and guiding framework that are relevant for data partners in ascertaining challenges associated with contributing data in data networks.

An augmented SMS intervention to improve access to antenatal CD4 testing and ART initiation in HIV-infected pregnant women: a cluster randomized trial.

BACKGROUND: Less than one-third of HIV-infected pregnant women eligible for combination antiretroviral therapy (ART) globally initiate treatment prior to delivery, with lack of access to timely CD4 results being a principal barrier. We evaluated the effectiveness of an SMS-based intervention to improve access to timely antenatal ART. METHODS: We conducted a stepped-wedge cluster randomized trial of a low-cost programmatic intervention in 20 antenatal clinics in Gaborone, Botswana. From July 2011-April 2012, 2 clinics were randomly selected every 4 weeks to receive an ongoing clinic-based educational intervention to improve CD4 collection and to receive CD4 results via an automated SMS platform with active patient tracing. CD4 testing before 26 weeks gestation and ART initiation before 30 weeks gestation were assessed. RESULTS: Three-hundred-sixty-six ART-naïve women were included, 189 registering for antenatal care under Intervention and 177 under Usual Care periods. Of CD4-eligible women, 100 (59.2%) women under Intervention and 79 (50.6%) women under Usual Care completed CD4 phlebotomy before 26 weeks gestation, adjusted odds ratio (aOR, adjusted for time that a clinic initiated Intervention) 0.87 (95% confidence interval [CI]0.47-1.63, P = 0.67). The SMS-based platform reduced time to clinic receipt of CD4 test result from median of 16 to 6 days (P<0.001), was appreciated by clinic staff, and was associated with reduced operational cost. However, rates of ART initiation remained low, with 56 (36.4%) women registering under Intervention versus 37 (24.2%) women under Usual Care initiating ART prior to 30 weeks gestation, aOR 1.06 (95%CI 0.53-2.13, P = 0.87). CONCLUSIONS: The augmented SMS-based intervention delivered CD4 results more rapidly and efficiently, and this type of SMS-based results delivery platform may be useful for a variety of tests and settings. However, the intervention did not appear to improve access to timely antenatal CD4 testing or ART initiation, as obstacles other than CD4 impeded ART initiation during pregnancy.