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

Attitudes About the Use of Newborn Dried Blood Spots for Research: A Survey of Underrepresented Parents

Objective To identify the relative importance of factors that impact parents’ attitudes toward use of their child’s dried newborn blood spots for research purposes. Methods Respondents were parents aged 18 and older with at least one child aged 17 or younger born in Indiana visiting an urban pediatrics clinic. They were asked to rate the acceptability of hypothetical scenarios involving the research use of blood spots. Three pieces of information varied between the scenarios: 1) who would be conducting the research; 2) whether the child’s identity would be linked to the spots; and 3) whether and how often the parents’ consent would be sought before the research began. Results A total of 506 predominantly black and low-income parents completed the survey. The conjoint analysis model showed good fit (Pearson’s R = 0.998, P < .001). The rank order of factors affecting parents’ attitudes was: 1) consent (importance score = 64.9), 2) whether the child’s identity was linked to the spot (importance score = 19.4), and 3) affiliation of the researcher using the spots (importance score = 14.6). Respondents preferred being asked for their consent each time their children’s spots would be used. They preferred that the children’s identity not be linked to the spots and that the research be conducted by university researchers, though these issues had less impact on attitudes than consent. Conclusions Parents strongly prefer that consent be sought for each use of their children’s blood spots. These findings have implications for future research and policy-making decisions

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

A rapid microwave-assisted procedure for easy access to Nx polydentate ligands for potential application in α-RIT

International audienceHeterocycles bearing a hydrazine moiety react with bisaldehydes or bisketones to afford new Nx polydentate ligands suitable for α-radioimmunotherapy. We developed a fast and efficient method using microwave-assisted technology to obtain chelators with variable size and number of coordination centres which were fully characterized. The complexation efficiency with astatine will be assessed

A Needs Assessment to Build International Research Ethics Capacity at Moi University

International Research Ethics Partnership. This online version is the post-print version (final, peer-reviewed and accepted for publication version) of the published article. For the published version, refer to the article citation within the item record.International collaborators in biomedical sciences face ethical challenges in the design,review, and conduct of research. Challenges include differences in research ethics capacity, cultural differences in interpretation and application of ethical principles, and cooperation between ethics review boards at collaborating institutions. Indiana University School of Medicine (Indianapolis, USA) and Moi University Faculty of Health Sciences (Eldoret, Kenya)developed a Memorandum of Understanding (MOU) to establish greater cooperation between their ethics review boards, followed by a joint needs assessment to assess barriers to implementing the MOU. Focus groups and interviews at each institution revealed that while each side verbalized understanding and respect for the other's culture, there were misunderstandings deeply rooted in each culture that could potentially derail the collaboration. Although the participants at each university agreed on the major principles and issues in research ethics and on the importance attributed to them, a more in-depth evaluation of the responses revealed important differences. Methods to address these misunderstandings are outlined in the recommended Best Practices.Fogarty International Center at the NIH, Indiana University Division of General Internal Medicine and Geriatrics, Indiana University School of Medicine, Indiana University International Development Fund, Indiana Genomics Initiative, Lilly Endowment, Inc

Modeling the martian atmosphere with the LMD global climate model

Introduction: For several years we have been developing a 3D Global Climate Model (GCM) for Mars derived from the models used on Earth for weather forecasting or climate changes studies [1]. The purpose of such a project is ambitious: we wish to build a 'Mars simulator' based only on physical equations, with no tailor-made forcing, but able to reproduce all the available observations of the Martian climate (temperatures, winds, but also clouds, dust, ices, chemical species, etc...). The GCM is constantly evolving, thanks to a contnuous collaboration between several teams based in France (LMD, SA), the UK (The Open University, University of Oxford) and Spain (Instituto de Astrofisica de Andalucia), and with the support of ESA and CNES. We are currently working on an improved version of the model. Several new parametrisation are included in the heart of the model (radiative transfer, surface and subsurface processes, dynamics) and the applications of the GCM are in contnuous development (Water, dust, CO2, radon cycles, photochemistry, thermosphere, ionosphere, etc...

Bulk high-Tc superconductors with drilled holes: how to arrange the holes to maximize the trapped magnetic flux ?

Drilling holes in a bulk high-Tc superconductor enhances the oxygen annealing and the heat exchange with the cooling liquid. However, drilling holes also reduces the amount of magnetic flux that can be trapped in the sample. In this paper, we use the Bean model to study the magnetization and the current line distribution in drilled samples, as a function of the hole positions. A single hole perturbs the critical current flow over an extended region that is bounded by a discontinuity line, where the direction of the current density changes abruptly. We demonstrate that the trapped magnetic flux is maximized if the center of each hole is positioned on one of the discontinuity lines produced by the neighbouring holes. For a cylindrical sample, we construct a polar triangular hole pattern that exploits this principle; in such a lattice, the trapped field is ~20% higher than in a squared lattice, for which the holes do not lie on discontinuity lines. This result indicates that one can simultaneously enhance the oxygen annealing, the heat transfer, and maximize the trapped field

Patient Preferences in Controlling Access to Their Electronic Health Records: a Prospective Cohort Study in Primary Care

Introduction: Previous studies have measured individuals’ willingness to share personal information stored in electronic health records (EHRs) with health care providers, but none has measured preferences among patients when they are allowed to determine the parameters of provider access. Methods: Patients were given the ability to control access by doctors, nurses, and other staff in a primary care clinic to personal information stored in an EHR. Patients could restrict access to all personal data or to specific types of sensitive information, and could restrict access for a specific time period. Patients also completed a survey regarding their understanding of and opinions regarding the process. Results: Of 139 eligible patients who were approached, 105 (75.5 %) were enrolled, and preferences were collected from all 105 (100 %). Sixty patients (57 %) did not restrict access for any providers. Of the 45 patients (43 %) who chose to limit the access of at least one provider, 36 restricted access only to all personal information in the EHR, while nine restricted access of some providers to a subset of the their personal information. Thirty-four (32.3 %) patients blocked access to all personal information by all doctors, nurses, and/or other staff, 26 (24.8 %) blocked access by all doctors and/or nurses, and five (4.8 %) denied access to all doctors, nurses, and staff. Conclusions: A significant minority of patients chose to restrict access by their primary care providers to personal information contained in an EHR, and few chose to restrict access to specific types of information. More research is needed to identify patient goals and understanding of the implications when facing decisions of this sort, and to identify the impact of patient education regarding information contained in EHRs and their use in the clinical care settin

Apatites in Gale Crater

ChemCam is an active remote sensing instrument suite that has operated successfully on MSL since landing Aug. 6th, 2012. It uses laser pulses to remove dust and to analyze rocks up to 7 m away. Laser-induced breakdown spectroscopy (LIBS) obtains emission spectra of materials ablated from the samples in electronically excited states. The intensities of the emission lines scale with the abundances of the related element. ChemCam is sensitive to most major rock-forming elements as well as to a set of minor and trace elements such as F, Cl, Li, P, Sr, Ba, and Rb. The measured chemical composition can then be used to infer the mineralogical composition of the ablated material. Here, we report a summary of inferred apatite detections along the MSL traverse at Gale Crater. We present the geologic settings of these findings and derive some interpretations about the formation conditions of apatite in time and space

Ethical Issues in Measuring Biomarkers in Children’s Environmental Health

Background: Studying the impact of environmental exposures is important in children because they are more vulnerable to adverse effects on growth, development, and health. Assessing exposure in children is difficult, and measuring biomarkers is potentially useful. Research measuring biomarkers in children raises a number of ethical issues, some of which relate to children as research subjects and some of which are specific to biomarker research. Objective: As an international group with experience in pediatric research, biomarkers, and the ethics of research in children, we highlight the ethical issues of undertaking biomarker research in children in these environments. Discussion: Significant issues include undertaking research in vulnerable communities, especially in developing countries; managing community expectations; obtaining appropriate consent to conduct the research; the potential conflicts of obtaining permission from an ethics review board in an economically developed country to perform research in a community that may have different cultural values; returning research results to participants and communities when the researchers are uncertain of how to interpret the results; and the conflicting ethical obligations of maintaining participant confidentiality when information about harm or illegal activities mandate reporting to authorities. Conclusion: None of these challenges are insurmountable and all deserve discussion. Pediatric biomarker research is necessary for advancing child health