The Pediatric Emergency Care Applied Research Network: a history of multicenter collaboration in the United States.

In this article, we review the history and progress of a large multicenter research network pertaining to emergency medical services for children. We describe the history, organization, infrastructure, and research agenda of the Pediatric Emergency Care Applied Research Network (PECARN), and highlight some of the important accomplishments since its inception. We also describe the network's strategy to grow its research portfolio, train new investigators, and study how to translate new evidence into practice. This strategy ensures not only the sustainability of the network in the future, but the growth of research in emergency medical services for children in general

Facilitating implementation of research evidence (FIRE): A randomised controlled trial and process evaluation of two models of facilitation informed by the promoting action on research implementation in health services (PARIHS) framework

Background: The PARIHS framework proposes that successful implementation of research evidence results from the complex interplay between the evidence to be implemented, the context of implementation and the facilitation processes employed. Facilitation is defined as a role (the facilitator) and a process (facilitation strategies/methods). Empirical evidence comparing different facilitation approaches is limited; this paper reports a trial of two different types of facilitation represented in the PARIHS framework. Methods: A pragmatic cluster randomised controlled trial with embedded process evaluation was undertaken in 24 long-term nursing care settings in four European countries. In each country, sites were randomly allocated to standard dissemination of urinary incontinence guideline recommendations and one of two types of external-internal facilitation, labelled Type A and B. Type A facilitation was a less resource intensive approach, underpinned by improvement methodology; Type B was a more intensive, emancipatory model of facilitation, informed by critical social science. The primary outcome was percentage documented compliance with guideline recommendations. Process evaluation was framed by realist methodology and involved quantitative and qualitative data collection from multiple sources. Findings: Quantitative data were obtained from reviews of 2313 records. Qualitative data included over 332 hours of observations of care; 39 hours observation of facilitation activity; 471 staff interviews; 174 resident interviews; 120 next of kin/carer interviews; and 125 stakeholder interviews. There were no significant differences in the primary outcome between study arms and all study arms improved over time. Process data revealed three core mechanisms that influenced the trajectory of the facilitation intervention: alignment of the facilitation approach to the needs and expectations of the internal facilitator and colleagues; engagement of internal facilitators and staff in attitude and action; and learning over time. Data from external facilitators demonstrated that the facilitation interventions did not work as planned, issues were cumulative and maintenance of fidelity was problematic. Implications for D&I Research: Evaluating an intervention - in this case facilitation - that is fluid and dynamic within the methodology of a randomised controlled trial is complex and challenging. For future studies, we suggest a theoretical approach to fidelity, with a focus on mechanisms, as opposed to dose and intensity of the intervention

Series: The research agenda for general practice/family medicine and primary health care in Europe. Part 2. Results: Primary care management and community orientation

At the WONCA Europe conference 2009 the recently published 'Research Agenda for General Practice/Family Medicine and Primary Health Care in Europe' was presented. It is a background paper and reference manual, providing advocacy of general practice/family medicine (GP/FM) in Europe. The Research Agenda summarizes the evidence relating to the core competencies and characteristics of the WONCA Europe defi nition of GP/FM, and its implications for general practitioners/family doctors, researchers and policy makers. The European Journal of General Practice publishes a series of articles based on this document. In a fi rst article, background, objectives, and methodology were discussed. In this second article, the results for the core competencies 'primary care management' and 'community orientation' are presented. Though there is a large body of research on various aspects of 'primary care management', it represents a very scattered rather than a meta view. Many studies focus on care for specifi c diseases, the primary/secondary care interface, or the implications of electronic patient records. Cost effi ciency or process indicators of quality are current outcomes. Current literature on community orientation is mainly descriptive, and focuses on either care for specifi c diseases, or specifi c patient populations, or on the uptake of preventive services. Most papers correspond poorly to the WONCA concept. For both core competencies, there is a lack of research with a longitudinal perspective and/or relevant health or quality of life outcomes as well as research on patients' preferences and education for organizational aspects of GP/FM

Timely and reliable evaluation of the effects of interventions: a framework for adaptive meta-analysis (FAME)

Most systematic reviews are retrospective and use aggregate data AD) from publications, meaning they can be unreliable, lag behind therapeutic developments and fail to influence ongoing or new trials. Commonly, the potential influence of unpublished or ongoing trials is overlooked when interpreting results, or determining the value of updating the meta-analysis or need to collect individual participant data (IPD). Therefore, we developed a Framework for Adaptive Metaanalysis (FAME) to determine prospectively the earliest opportunity for reliable AD meta-analysis. We illustrate FAME using two systematic reviews in men with metastatic (M1) and non-metastatic (M0)hormone-sensitive prostate cancer (HSPC)

Evaluating the impact of patients' online access to doctors' visit notes: designing and executing the OpenNotes project

Background: Providers and policymakers are pursuing strategies to increase patient engagement in health care. Increasingly, online sections of medical records are viewable by patients though seldom are clinicians' visit notes included. We designed a one-year multi-site trial of online patient accessible office visit notes, OpenNotes. We hypothesized that patients and primary care physicians (PCPs) would want it to continue and that OpenNotes would not lead to significant disruptions to doctors' practices. Methods/Design: Using a mixed methods approach, we designed a quasi-experimental study in 3 diverse healthcare systems in Boston, Pennsylvania, and Seattle. Two sites had existing patient internet portals; the third used an experimental portal. We targeted 3 key areas where we hypothesized the greatest impacts: beliefs and attitudes about OpenNotes, use of the patient internet portals, and patient-doctor communication. PCPs in the 3 sites were invited to participate in the intervention. Patients who were registered portal users of participating PCPs were given access to their PCPs' visit notes for one year. PCPs who declined participation in the intervention and their patients served as the comparison groups for the study. We applied the RE-AIM framework to our design in order to capture as comprehensive a picture as possible of the impact of OpenNotes. We developed pre- and post-intervention surveys for online administration addressing attitudes and experiences based on interviews and focus groups with patients and doctors. In addition, we tracked use of the internet portals before and during the intervention. Results: PCP participation varied from 19% to 87% across the 3 sites; a total of 114 PCPs enrolled in the intervention with their 22,000 patients who were registered portal users. Approximately 40% of intervention and non-intervention patients at the 3 sites responded to the online survey, yielding a total of approximately 38,000 patient surveys. Discussion: Many primary care physicians were willing to participate in this "real world" experiment testing the impact of OpenNotes on their patients and their practices. Results from this trial will inform providers, policy makers, and patients who contemplate such changes at a time of exploding interest in transparency, patient safety, and improving the quality of care

Achieving the Potential of Health Care Performance Measures: Timely Analysis of Immediate Health Policy issues

The United States is on the cusp of a new era, with greater demand for performance information, greater data availability, and a greater willingness to integrate performance information into public policy. This era has immense promise to deliver a learning health care system that encourages collaborative improvements in systems-based care, improves accountability, helps consumers make important choices, and improves quality at an acceptable cost. However, to curtail the possibility of unintended adverse consequences, it is important that we invest in developing sound measures, understand quality measures' strengths and limitations, study the science of quality measurement, and reduce inaccurate inferences about provider performance

Design patterns for the development of electronic health record-driven phenotype extraction algorithms

AbstractBackgroundDesign patterns, in the context of software development and ontologies, provide generalized approaches and guidance to solving commonly occurring problems, or addressing common situations typically informed by intuition, heuristics and experience. While the biomedical literature contains broad coverage of specific phenotype algorithm implementations, no work to date has attempted to generalize common approaches into design patterns, which may then be distributed to the informatics community to efficiently develop more accurate phenotype algorithms.MethodsUsing phenotyping algorithms stored in the Phenotype KnowledgeBase (PheKB), we conducted an independent iterative review to identify recurrent elements within the algorithm definitions. We extracted and generalized recurrent elements in these algorithms into candidate patterns. The authors then assessed the candidate patterns for validity by group consensus, and annotated them with attributes.ResultsA total of 24 electronic Medical Records and Genomics (eMERGE) phenotypes available in PheKB as of 1/25/2013 were downloaded and reviewed. From these, a total of 21 phenotyping patterns were identified, which are available as an online data supplement.ConclusionsRepeatable patterns within phenotyping algorithms exist, and when codified and cataloged may help to educate both experienced and novice algorithm developers. The dissemination and application of these patterns has the potential to decrease the time to develop algorithms, while improving portability and accuracy

Introduction of a Medical Patient Portal to the Uninsured Patient

abstract: Purpose: The purpose of this evidence-based practice project was to improve participation by increasing registration on to a medical patient portal to an uninsured population. Medical patient portals have the potential to provide patients with timely, transparent access to health care information and engage them in their health care process and management. This may result in improved disease management outcomes. Methods: This project was guided by a The Rosswurm and Larrabee Model for Change to Evidence- Based Practice and Pender’s health promotion framework. IRB Approved by ASU. The instruction was implemented at an urban clinic in downtown phoenix that serves uninsured and underserved individuals. Uninsured participants were recruited (n=50). A survey pre and post registration was conducted to assess knowledge and medical portal participation in addition a random pre and post chart review was performed. Results: Descriptive statistics was used to describe sample and outcome variables. A chi-square test of independence was calculated comparing pre and post intervention significant change was found (χ2 (1) = .002, P<0.05.), a paired sample t test was calculated to compare knowledge pre and post registration instruction the mean pre-10.187(SD = 4.422), post mean was 16.958(SD=.856). A significant increase of knowledge was found (t (47) =-9.573, p (<.001). Outcomes: In this population both patients and providers have seen significant benefits such as increased communication and patient participation, from the implementation of evidence based educational tools such as instruction with teach back, and the usage of brochures. Potential Implication for sustainability includes the lack of a designated individual that is bilingual to register patients, making patients aware of the existence of a medical patient portal, patient’s fear of sharing immigration status

An analytical approach to characterize morbidity profile dissimilarity between distinct cohorts using electronic medical records

AbstractWe describe a two-stage analytical approach for characterizing morbidity profile dissimilarity among patient cohorts using electronic medical records. We capture morbidities using the International Statistical Classification of Diseases and Related Health Problems (ICD-9) codes. In the first stage of the approach separate logistic regression analyses for ICD-9 sections (e.g., “hypertensive disease” or “appendicitis”) are conducted, and the odds ratios that describe adjusted differences in prevalence between two cohorts are displayed graphically. In the second stage, the results from ICD-9 section analyses are combined into a general morbidity dissimilarity index (MDI). For illustration, we examine nine cohorts of patients representing six phenotypes (or controls) derived from five institutions, each a participant in the electronic MEdical REcords and GEnomics (eMERGE) network. The phenotypes studied include type II diabetes and type II diabetes controls, peripheral arterial disease and peripheral arterial disease controls, normal cardiac conduction as measured by electrocardiography, and senile cataracts