Gina Bravo was a Visiting Scholar at CBSSM, 2011-2012. She has a PhD in mathematics and post-doctoral training in clinical epidemiology. Professor of Public Health at the University of Sherbrooke since 1991, she teaches research methods and biostatistics to MSc and PhD candidates. She is a member of the Research Centre on Aging located within the University Institute of Geriatrics of Sherbrooke. She has received personal research awards and peer-reviewed grants from the Quebec Health Research funding agency and the Canadian Institutes of Health Research.
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Funded by Health and Human Services, Department of-National Institutes of Health
Funding Years: 2013 - 2015.
With the aging of society and restructuring of families, it is increasingly important to understand how individuals become disabled. New disability is associated with increased mortality, substantial increases in medical costs (often borne by public payers), and a heavy burden on families and caregivers. While the disablement process?as theorized by Verburgge & Jette and their successors?has traditionally been seen as chronic and gradual, there is increasing recognition that acute events play a critical role in disability. Medical illnesses are not the only potentially disabling events. NIA & NINR recently posted PA-11-265, calling for ?Social and Behavioral Research on the Elderly in Disasters? in recognition that natural disasters are common, but we know little about their impact on health and disability. The National Research Council?s Committee on Population published a report in 2009 documenting not only our ignorance in this area, but, importantly, the potential value of studying disasters to understand fundamental processes in disability and health.
Our long-term research agenda is (a) to test the hypothesis that natural disasters cause enduring morbidity for survivors that is not fully addressed by existing health and welfare programs, and (b) to discover remediable mechanisms that generate that enduring morbidity. Here we propose a nationwide test of the association of living in a disaster area with individuals? long-term disability and health care use. To perform this test, we will combine the unique longitudinal resources of over 16,000 respondents in the linked Health and Retirement Study (HRS) / Medicare files with a newly constructed mapping of all FEMA disaster declarations between 1998 and 2012. We will address key gaps in the existing literature of detailed single-disaster studies with a generalizable perspective across time and space via these Specific Aims:
AIM 1: Quantify the association between the extent of a disaster ? measured as the repair cost to public infrastructure and increases in level of disability among survivors. We will follow respondents for an average of 5 years after the disaster. AIM 2: Quantify the association between the extent of a disaster and increases in the likelihood of hospitalization among survivors. AIM 3: Test the hypothesis that increases in level of disability and likelihood of hospitalization after disasters are worse for those living in counties with higher levels of poverty.
This proposal is specifically responsive to PA-11-265. This proposal is innovative because long-term effects of disasters, particularly for vulnerable older Americans, have been systematically neglected in previous research. It is significant because it will address the public health consequences of a relatively common but understudied exposure. Further, a key contribution of this R21 will be to evaluate the feasibility of the National Research Council conjecture that natural disasters can be studied as exogenous shocks to the environment, and that we can thereby test and elaborate usually endogenous mechanisms in the development of disability.
PI(s): Theodore Iwashyna
Co-I(s): Kenneth Langa, Yun Li, Anne Sales
Jodyn Platt, MPH, PhD
Department of Learning Health Sciences
Terms and Conditions for Trust in Learning Health Systems
The next generation of health information technology, organized as “learning health systems,” promises efficient, engineered solutions to the well-known and enduring maladies of the existing U.S. health infrastructure: escalating costs, poor health outcomes, ineffective use of technology, sluggish research pipelines, dangerous medical error rates, and failure to implement known clinical best practices. Learning health systems would capitalize on "big data" enterprises to accelerate the production and application of knowledge in health care. However, the sharing of health information required, both within and across institutions, greatly exceeds the public’s understanding. These initiatives are riding a precarious edge as the gap between public expectations and the realities of institutional data sharing widens at an unprecedented rate. This presentation considers the causes and consequences of trust and mistrust of health information systems, their data sharing practices, and their policy implications.
Funded by the Informed Medical Decision Making Foundation
Funding Years: 2010-2012
The overall long-term goal of this research program is to develop values clarification exercises that improve decision quality. The research funded by this grant aims to establish the feasibility of the development and evaluation of a dynamic interactive tool that explicitly encourages values exploration and clarification. For this study, values exploration means that patients will be encouraged to “try on” different ideas, see immediate and dynamic visual feedback, adjust and re-adjust their values, and save settings at multiple time points in order to recall and compare thoughts and feelings. It is hypothesized that by explicitly supporting a potentially circuitous path of values exploration, the resulting approach will be more reflective of the intuitive processes that people follow to arrive at states of greater clarity.
Angela Fagerlin (PI)
Funded by NIH - Department of Health and Human Services
Funding Years: 2011-2016
Disorders of Sex Development are defined as congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. One of the most defining moments of our lives is when, in the womb, we embark on a male or female path. Disruption of typical male or female development, whether mild or severe, results in DSD, which occur quite frequently, in about 1% of the human population. DSD are extremely stressful for parents and, as they grow older, the affected person and are often accompanied by additional medical and psychological problems; yet little is known about the causes of DSD and what healthcare teams should do in the short and long term. This project proposes to design a way to learn about the genetic causes and the psychological consequences of DSD, and to use these data to provide healthcare teams with procedures to evaluate and improve care for these patients and their families.
PI(s): David Sandberg
Co-I(s): Eric Vilain, Edward Goldman
Funded by the National Institutes of Health
Funding Years: 2012-2017
Intraventricular hemorrhage (IVH) occurs in many patients with intracerebral and subarachnoid hemorrhage (SAH). Recent studies have found IVH is a predictor of poor outcome after intracerebral hemorrhage and that hydrocephalus develops in 55% intracerebral hemorrhage patients with IVH. Hydrocephalus is also a major problem in SAH. Early hydrocephalus occurs in 20-50% SAH patients and is associated with poor clinical grade. However, the mechanisms of IVH-induced hydrocephalus are not well understood. Lysis of erythrocytes results in iron accumulation in the brain and causes brain damage after intracerebral hemorrhage. However, the role of erythrocyte lysis and iron toxicity in IVH-induced brain injury and hydrocephalus has still to be elucidated. Erythrocyte lysis after IVH may start very early. Hemoglobin released from red blood cells reaches its peak concentration by the second day following injection of blood into the cerebrospinal fluid of dogs. Hemoglobin release, from lysis of erythrocytes in human intracranial hemorrhage, increases during the first few days. Erythrocyte lysis appears to result from either depletion of intracellulr energy reserves or activation of the complement system. We have established an IVH model in rats and long-term ventricular dilatation has been observed. Recently we have found that hydrocephalus occurs in a model of SAH which results in intraventricular blood. Our preliminary data have demonstrated: 1) Intraventricular injection of autologous whole blood causes iron accumulation, hydrocephalus, neuronal death and brain tissue loss in the hippocampus; 2) Intraventricular injection of lysed erythrocytes rather than packed erythrocytes causes hydrocephalus by 24 hours; 3) Heme oxygenase-1 and ferritin levels are increased significantly in the hippocampus and periventricular areas following IVH; 4) Intraventricular injection of iron alone can also result in acute hydrocephalus; 5) Deferoxamine, an iron chelator, reduces IVH-induced hydrocephalus and hippocampal tissue loss. In this application, we propose to test the following specific aims: 1) Determine whether erythrocyte lysis and hemoglobin release cause hydrocephalus and neuronal death following IVH; 2) Determine whether complement inhibition reduces erythrocyte lysis and IVH/SAH-induced brain injury; 3) Examine the natural time courses of iron buildup, oxidative stress and upregulation of iron handling proteins in the brain after IVH; 4) Determine whether heme oxygenase inhibition reduces heme degradation and IVH/SAH-induced brain injury; and 5) Determine whether iron chelation reduces oxidative stress, hydrocephalus and neuronal death after IVH/SAH in aged rats. The purpose of our project is to investigate the mechanisms of brain injury after IVH. The long-term goal of our studies is to limit hemorrhagic brain damage in patients.
PI(s): Guohua Xi
Co-I(s): Ya Hua, Richard Keep, Lewis Morgenstern
In the January-February issue of IRB: Ethics & Human Research, Scott Y.H. Kim, Raymond de Vries, Renee Wilson, Sonali Parnami, Samuel Frank, Karl Kieburtz, and Robert G. Holloway present results of a study about the therapeutic orientation of research participants.
The authors examined the relationship between understanding and appreciation of randomization probabilities in 29 individuals recruited for a sham surgery controlled intervention study in Parkinson's disease. 83% provided the correct, quantitative answer to the understanding question; of those, one group (55%) answered the appreciation question correctly using quantitative terms, whereas the remaining group (45%) provided only qualitative comments.
The therapeutic orientation of research participants raises concerns about the adequacy of consent because such an orientation could cloud understanding of key elements of research. Further, even if participants understand (i.e., intellectually comprehend) elements of research, they may not appreciate them because they fail to apply such facts to themselves.
Study participants frequently made "unrealistic" probability statements, even while providing correct quantitative responses. Analysis showed that this apparent "irrationality" may in fact hide a deeper rationality -- namely, conversational rationality, which is part of the contextual nature of meaning conveyed in everyday language. Ignoring conversational rationality may lead to wrongly labeling research subjects as irrational. Click here for more information.