Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers

Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion

The Impact of PBL as a STEM School Reform Model

Project/problem-based learning (PBL) can provide an effective model for school reform when implemented with fidelity. In the report, Rising Above the Gathering Storm, it was recommended that if the U.S. is to remain competitive in the 21st-century economy, there must be a serious effort to “enlarge the pipeline of students who are prepared to enter college and graduate with a degree in STEM” (National Academy of Sciences, National Academy of Engineering, & Institute of Medicine, 2007, p. 6). The report included the recommendation that states develop statewide specialty STEM high schools (National Academy of Sciences, National Academy of Engineering, & Institute of Medicine, 2007, p. 6). In 2010, the Texas Science, Technology, Engineering, and Mathematics Academy (T-STEM) initiative was implemented to develop specialty STEM schools similar to those described in Rising Above the Gathering Storm. The primary instructional strategy of T-STEM academies is problem- and project-based learning. In the STEM context, PBL is well suited as a primary pedagogy for STEM learning. This paper examines the following questions: What outcomes occur when PBL is implemented in a low performing school district? What is the role of PBL in school improvement? What are the challenges to implementing PBL with high fidelity

Columbia at sea: America enters the Pacific, 1787-1793

This dissertation evaluates the earliest phase of American engagement in the Pacific Ocean through a close examination of the fur-trading ship Columbia during the years 1787-93. I argue that Columbia established the dominant pattern of American commerce in the Pacific and, in doing so, played a significant role in the integration of disparate shores into a single Pacific World. This study also reconstructs her pioneering, yet understudied voyages in order to challenge a historiographical neglect of the eighteenth-century foundations of American empire in the Pacific. My research unfolds on three scales. First, Columbia reveals a series of interconnected local histories that hinge upon individuals in Boston, on the Northwest Coast of America, and in Canton. Second, her expeditions show how American merchants and sea captains leveraged transnational variations in trade to reorient the United States toward the commerce of the Pacific Ocean. Third, Columbia demonstrates how entrepreneurs of the Early Republic established a global trade circuit integrating the markets of the United States, the Pacific World, and China. This study also stresses the experimental nature of the Columbia expeditions. By reconstructing the financial outcomes of her voyages, I emphasize improvisation and adaptation as vital strategies in the development of a successful enterprise in the ocean hemisphere. Columbia’s success inspired a new generation of investors, imitators, and innovators to pursue similar profits in the Pacific World

Perspective: Is It Time for Advocacy Training in Medical Education?

As the modern medical system becomes increasingly complex, a debate has arisen over the place of advocacy efforts within the medical profession. The authors argue that advocacy can help physicians fulfill their social contract. For physicians to become competent in patient-centered, clinical, administrative, or legislative advocacy, they require professional training. Many professional organizations have called for curricular reform to meet society's health needs during the past 30 years, and the inclusion of advocacy training in undergraduate, graduate, and continuing medical education is supported on both pragmatic and ethical grounds. Undergraduate medical education, especially, is an ideal time for this training because a standard competency can be instilled across all specialties. Although the Accreditation Council for Graduate Medical Education includes advocacy training in curricula for residency programs, few medical schools or residency programs have advocacy electives. By understanding the challenges of the health care system and how to change it for the better, physicians can experience increased professional satisfaction and effectiveness in improving patient care, systems-based practice, and public health

A Bibliometric Analysis of an International Research Ethics Trainee Program

We used bibliometric analysis to evaluate the citations associated with publications by trainees in the Fogarty International Center’s International Research Ethics Education and Curriculum Development program. Papers published between 2004 and 2008 were identified for analysis. The outcome measures were total citations, h-index, and i-10. A total of 328 manuscripts were identified, with a yearly average of 66 publications and 363 citations. The median number of citations per paper is 3 (IQR Q1–Q3:6). 12.6% (n = 53) of papers were cited over 10 times and the h-index is 22, indicating that 22 papers had been cited at least 22 times. The data indicate that trainees have been productive and contributed to the scholarly literature. Future studies to benchmark this performance with other bioethics education programs are required to make interpretation of citation analysis more meaningful

Points to consider in ethically constructing patient-controlled electronic health records

Patient advocates and leaders in informatics have long proposed that patients should have greater ability to control the information in their electronic health record (EHR), including how it can be accessed by their health care providers. The value of such “granular” control, as it has been termed, has been supported prominently in an influential report by the President’s Council of Advisors on Science and Technology (PCAST). Recently, the U.S. Department of Health and Human Services (HHS) Office of the National Coordinator for Health Information Technology (ONC) funded several projects to study key components of EHR systems, including exploring ways to allow granular control. This “Points to Consider” document provides an overview of the benefits, risks and challenges of granular control of EHRs; a review of the key ethical principles, values, and Fair Information Practices that ought to guide development of an EHR that accommodates granular control, and seven detailed Points to Consider to guide decision making.Award No: 90HT0054/01, a cooperative agreement program from the US Department of Health and Human Services, Office of the National Coordinator for Health IT to Indiana Health Information Technology, Inc. (IHIT) under the State HIE – Challenge Grant Program to the Indiana University School of Medicine and Regenstrief Institute, Inc

Report from the PredictER Expert Panel Meeting, November 2, 2007

On November 2, 2007, the Indiana University Center for Bioethics convened an expert panel on predictive health research (PHR) as part of the Center’s Program in Predictive Health Ethics Research (http://www.bioethics.iu.edu/predicter.asp) which is supported by a grant from the Richard M. Fairbanks Foundation. The goal of this meeting was to identify the major obstacles and opportunities for engaging the community in PHR. PredictER intends to use the results of this meeting as a first step toward more fully engaging the Indianapolis community in discussions about PHR.Richard M. Fairbanks Foundatio

Observations of suspected low-mass ost-T Tauri stars and their evolutionary status

We present the results of a study of five X-ray discovered weak emission pre-main-sequence stars in the Taurus-Auriga star formation complex. All are of spectral type K7-M0, and about 1-2 mag above the main sequence. One is double-lined spectroscopic binary, the first spectroscopic binary PMS star to be confirmed. We discuss the ages, masses, and radii of these stars as determined by photometry and spectroscopy. We investigate the difference in emission strength between these and the T Tauri stars and conclude that these "post-T Tauri" do indeed appear more evolved than the T Tauri, although there is no evidence of any significant difference in ages

Improving the accessibility and transferability of machine learning algorithms for identification of animals in camera trap images: MLWIC2

Motion-activated wildlife cameras (or “camera traps”) are frequently used to remotely and noninvasively observe animals. The vast number of images collected from camera trap projects has prompted some biologists to employ machine learning algorithms to automatically recognize species in these images, or at least filter-out images that do not contain animals. These approaches are often limited by model transferability, as a model trained to recognize species from one location might not work as well for the same species in different locations. Furthermore, these methods often require advanced computational skills, making them inaccessible to many biologists. We used 3 million camera trap images from 18 studies in 10 states across the United States of America to train two deep neural networks, one that recognizes 58 species, the “species model,” and one that determines if an image is empty or if it contains an animal, the “empty-animal model.” Our species model and empty-animal model had accuracies of 96.8% and 97.3%, respectively. Furthermore, the models performed well on some out-of-sample datasets, as the species model had 91% accuracy on species from Canada (accuracy range 36%–91% across all out-of-sample datasets) and the empty-animal model achieved an accuracy of 91%–94% on out-of-sample datasets from different continents. Our software addresses some of the limitations of using machine learning to classify images from camera traps. By including many species from several locations, our species model is potentially applicable to many camera trap studies in North America. We also found that our empty-animal model can facilitate removal of images without animals globally. We provide the trained models in an R package (MLWIC2: Machine Learning for Wildlife Image Classification in R), which contains Shiny Applications that allow scientists with minimal programming experience to use trained models and train new models in six neural network architectures with varying depths