167 research outputs found
Citizen Suits Under the Clean Air Act: Universal Standing for the Uninjured Private Attorney General?
Giving patients granular control of personal health information: Using an ethics âPoints to Considerâ 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 âPoints to Considerâ (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 (âPointsâ) 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
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 âgranularâ control, as it has been termed, has been supported prominently in an influential report by the Presidentâs 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 âPoints to Considerâ 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 â Challenge Grant Program to the Indiana University School of Medicine and Regenstrief Institute, Inc
Provider Responses to Patients Controlling Access to their Electronic Health Records: A Prospective Cohort Study in Primary Care
Introduction: Applying Fair Information Practice principles to electronic health records (EHRs) requires allowing patient control over who views their data.
Methods: We designed a program that captures patientsâ preferences for provider access to an urban health systemâs EHR. Patients could allow or restrict providersâ access to all data (diagnoses, medications, test results, reports, etc.) or only highly sensitive data (sexually transmitted infections, HIV/AIDS, drugs/alcohol, mental or reproductive health). Except for information in free-text reports, we redacted EHR data shown to providers according to patientsâ preferences. Providers could âBreak the Glassâ to display redacted information. We prospectively studied this system in one primary care clinic, noting redactions and when users âBroke the Glass,â and surveyed providers about their experiences and opinions.
Results: Eight of 9 eligible clinic physicians and all 23 clinic staff participated. All 105 patients who enrolled completed the preference program.. Providers did not know which of their patients were enrolled and nor their preferences for accessing their EHRs. During the six-month prospective study, 92 study patients (88%) returned 261 times during which providers viewed their EHRs 126 times (48%). Providers âbroke the glassâ 102 times, 92 times for patients not in the study and 10 times for 6 returning study patients, all of whom had restricted EHR access. Providers âbroke the glassâ for 6 (14%) of 43 returning study patients with redacted data vs. zero among 49 study patients without redactions (p=0.01). Although 54% of providers agreed that patients should have control over who sees their EHR information, 58% believed restricting EHR access could harm provider-patient relationships and 71% felt quality of care would suffer.
Conclusions: Patients frequently preferred restricting provider access to their EHRs. Providers infrequently overrode patientsâ preferences to view hidden data. Providers believed restricting EHR access would adversely impact patient care. Applying Fair Information Practice principles to EHRs will require balancing patient preferences, providersâ needs, and health care quality.This study was supported in part by grant number 90HT005 from the Office of the National Coordinator for Health Information Technology (ONC) to the Indiana Health Information Technology Corporation. The opinions expressed in this work are the authorsâ and do not necessarily reflect the positions of ONC, IHIT, Eskenazi Health, Indiana University, or the Regenstrief Institute, Inc
Submaximal Oxygen Uptake Kinetics, Functional Mobility, and Physical Activity in Older Adults with Heart Failure and Reduced Ejection Fraction
Background: Submaximal oxygen uptake measures are more feasible and may better predict clinical cardiac outcomes than maximal tests in older adults with heart failure (HF). We examined relationships between maximal oxygen uptake, submaximal oxygen kinetics, functional mobility, and physical activity in older adults with HF and reduced ejection fraction.
Methods: Older adults with HF and reduced ejection fraction (n = 25, age 75 ± 7 years) were compared to 25 healthy age- and gender-matched controls. Assessments included a maximal treadmill test for peak oxygen uptake (VO2peak), oxygen uptake kinetics at onset of and on recovery from a submaximal treadmill test, functional mobility testing [Get Up and Go (GUG), Comfortable Gait Speed (CGS), Unipedal Stance (US)], and self-reported physical activity (PA).
Results: Compared to controls, HF had worse performance on GUG, CGS, and US, greater delays in submaximal oxygen uptake kinetics, and lower PA. In controls, VO2peak was more strongly associated with functional mobility and PA than submaximal oxygen uptake kinetics. In HF patients, submaximal oxygen uptake kinetics were similarly associated with GUG and CGS as VO2peak, but weakly associated with PA.
Conclusions: Based on their mobility performance, older HF patients with reduced ejection fraction are at risk for adverse functional outcomes. In this population, submaximal oxygen uptake measures may be equivalent to VO2 peak in predicting functional mobility, and in addition to being more feasible, may provide better insight into how aerobic function relates to mobility in older adults with HF
Ice cloud formation potential by free tropospheric particles from long-range transport over the Northern Atlantic Ocean
Long-range transported free tropospheric particles can play a significant role on heterogeneous ice nucleation. Using optical and electron microscopy we examine the physicochemical characteristics of ice nucleating particles (INPs). Particles were collected on substrates from the free troposphere at the remote Pico Mountain Observatory in the Azores Islands, after long-range transport and aging over the Atlantic Ocean. We investigate four specific events to study the ice formation potential by the collected particles with different ages and transport patterns. We use single-particle analysis, as well as bulk analysis to characterize particle populations. Both analyses show substantial differences in particle composition between samples from the four events; in addition, single-particle microscopy analysis indicates that most particles are coated by organic material. The identified INPs contained mixtures of dust, aged sea salt and soot, and organic material acquired either at the source or during transport. The temperature and relative humidity (RH) at which ice formed, varied only by 5% between samples, despite differences in particle composition, sources, and transport patterns. We hypothesize that this small variation in the onset RH may be due to the coating material on the particles. This study underscores and motivates the need to further investigate how long-range transported and atmospherically aged free tropospheric particles impact ice cloud formatio
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Halogen activation and radical cycling initiated by imidazole-2-carboxaldehyde photochemistry
Atmospheric aerosol particles can contain light-absorbing organic compounds, also referred to as brown carbon (BrC). The ocean surface and sea spray aerosol particles can also contain light-absorbing organic species referred to as chromophoric dissolved organic matter (CDOM). Many BrC and CDOM species can contain carbonyls, dicarbonyls or aromatic carbonyls such as imidazole-2-carboxaldehyde (IC), which may act as photosensitizers because they form triplet excited states upon UV–VIS light absorption. These triplet excited states are strong oxidants and may initiate catalytic radical reaction cycles within and at the surface of atmospheric aerosol particles, thereby increasing the production of condensed-phase reactive oxygen species (ROS). Triplet states or ROS can also react with halides, generating halogen radicals and molecular halogen compounds. In particular, molecular halogens can be released into the gas phase, which is one halogen activation pathway. In this work, we studied the influence of bromide and iodide on the photosensitized production and release of hydroperoxy radicals (HO2) upon UV irradiation of films in a coated wall flow tube (CWFT) containing IC in a matrix of citric acid (CA) irradiated with UV light. In addition, we measured the iodine release upon irradiation of IC â CA films in the CWFT. We developed a kinetic model coupling photosensitized CA oxidation with condensed-phase halogen chemistry to support data analysis and assessment of atmospheric implications in terms of HO2 production and halogen release in sea spray particles. As indicated by the experimental results and confirmed by the model, significant recycling of halogen species occurred via scavenging reactions with HO2. These prevented the full and immediate release of the molecular halogen (bromine and iodine) produced. Recycling was stronger at low relative humidity, attributed to diffusion limitations. Our findings also show that the HO2 production from BrC or CDOM photosensitized reactions can increase due to the presence of halides, leading to high HO2 turnover, in spite of low release due to the scavenging reactions. We estimated the iodine production within sea salt aerosol particles due to iodide oxidation by ozone (O3) at 5.0×10-6 M s−1 assuming O3 was in Henry's law equilibrium with the particle. However, using an O3 diffusion coefficient of 1×10-12 cm2 s−1, iodine activation in an aged, organic-rich sea spray is estimated to be 5.5×10-8 M s−1. The estimated iodine production from BrC photochemistry based on the results reported here amounts to 4.1×10-7 M s−1 and indicates that BrC photochemistry can exceed O3 reactive uptake in controlling the rates of iodine activation from sea spray particles under dry or cold conditions where diffusion is slow within particles.</p
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Reply to: New Meta- and Mega-analyses of Magnetic Resonance Imaging Findings in Schizophrenia: Do They Really Increase Our Knowledge About the Nature of the Disease Process?
This work was supported by National Institute of Biomedical Imaging and Bioengineering Grant No. U54EB020403 (to the ENIGMA consortium)
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