Raising the visibility of protected data: A pilot data catalog project

Sharing research data that is protected for legal, regulatory, or contractual reasons can be challenging and current mechanisms for doing so may act as barriers to researchers and discourage data sharing. Additionally, the infrastructure commonly used for open data repositories does not easily support responsible sharing of protected data. This chapter presents a case study of an academic university library’s work to configure the existing institutional data repository to function as a data catalog. By engaging in this project, university librarians strive to enhance visibility and access to protected datasets produced at the institution and cultivate a data sharing culture

Prospective Memory Impairment in Parkinson Disease without Dementia: Cognitive Mechanisms and Intervention

Cognitive impairment among non-demented individuals with Parkinson disease (PD) produces significant disability, reduced quality of life, and restricted participation. This dissertation will cover PD-related impairment in prospective memory, or the ability to remember to execute delayed intentions at the appropriate moment in the future. Prospective memory impairment in PD is increasingly recognized as a functionally and clinically relevant problem and viable target for cognitive intervention. To lay the groundwork for the development of effective interventions for prospective memory in PD, this dissertation examines the cognitive mechanisms underlying prospective memory impairment in PD and the potential of training in a targeted strategy to improve prospective memory in PD. Specifically, it focuses on the efficacy of an associative encoding strategy called implementation intentions for addressing PD-related deficits in prospective memory in a laboratory setting and as reported in everyday life. Results indicate that implementation intentions training holds promise for improving prospective memory in PD. A synthesis and analysis of the dissertation studies reveals avenues for future research that will bolster the scientific and clinical impact of this line of work

Use of Implementation Mapping with community-based participatory research: Development of implementation strategies of a new goal setting and goal management intervention system

AIMS: This study aims to identify implementation determinants, mechanisms of action, implementation strategies, and implementation outcome evaluation plans for a new theory-based rehabilitation goal setting and goal management intervention system, called MyGoals, using Implementation Mapping with community-based participatory research principles. METHODS: We completed Implementation Mapping tasks 1 to 4 as a planning team consisting of MyGoals target implementers (occupational therapists (OTs), MyGoals intervention target clients (adults with chronic conditions), and the research team. We are currently conducting mapping task 5. These processes were guided by the Consolidated Framework for Implementation Research, social cognitive theory, the taxonomy of behavior change methods, and Proctor\u27s implementation research framework. RESULTS: We identified intervention-level determinants ( CONCLUSION: We produced tailored implementation strategies for a rehabilitation goal setting and goal management intervention by using Implementation Mapping with community-based participatory research principles. The MyGoals implementation strategies may help OTs implement high-quality goal setting and goal management practice and thus contribute to bridging current research-practice gaps. Our findings can provide insight on how to apply implementation science in rehabilitation to improve the development and translation of evidence-based interventions to enhance health in adults with chronic conditions

Creating Habits for Inclusive Change

The act of transforming community outcomes requires diverse stakeholders across an array of settings to become actors of change. While this movement to action lies at the heart of effective community change, it also remains one of the most challenging aspects of collective work. Drawing from the ABLe Change Framework systems-change model, this article presents four processes used in numerous communities across the United States to effectively engage diverse stakeholders in taking actions to improve local systems. These processes prioritize the voices of the most disadvantaged within communities and engage them as key actors in the change process. This article introduces the ABLe Change Framework tools, which are used to promote these action-oriented habits, and then discusses how foundations can use them to create the conditions that promote inclusive community chang

Cognitive correlates of instrumental activities of daily living performance in Parkinson disease without dementia

OBJECTIVE: To investigate cognitive correlates of instrumental activities of daily living (IADL) performance among people with Parkinson disease (PD) without dementia. DESIGN: Cross-sectional. SETTING: Academic medical center. PARTICIPANTS: Volunteer sample (N=161) comprising participants with PD without dementia (n=102) and healthy comparison (HC) participants (n=59). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Performance-based assessment of cognitively-demanding IADL (meal preparation, bill paying, shopping, medication management, small home repair), neuropsychological tests (attentional control/flexibility, planning, working memory, memory, crystallized intelligence), and measures of motor function and other characteristics (eg, depressive symptoms). RESULTS: There were no group differences in neuropsychological test performance ( CONCLUSIONS: The PD group had cognitive IADL performance limitations despite being unimpaired on neuropsychological tests. Within PD, neuropsychological test performance accounted for a small but significant portion of the variance in cognitive IADL performance over and above the effects of motor and other impairments. These results support the added value of using performance-based IADL assessments in functional evaluations of individuals with early and mild PD without dementia

Introducing First Year Medical Students to Personalized Medicine Concepts in a Small Group Activity

Presented as a Poster Presentation at 2020 IUSM Education Day.An individuals’ genetic profile is becomingly an increasingly important parameter in healthcare decisions. This small group activity was developed to introduce first year medical students in the Molecules to Cells and Tissues course to the concept and significance of Pharmacogenomics and personalized medicine. Additionally, this activity provided students with an opportunity to work with a large dataset and use the information to impact clinical decision making. This activity has two cases, takes student groups approximately 2 hours to complete, and requires internet access. Case materials are available through the learning management system Canvas, and include open-ended questions to guide students through the cases. In these cases students explore the functional significance of different alleles of a panel of cytochrome P450 genes. The group activity has the students examine a large data set of cytochrome P450 genes and cognate alleles to determine their prevalence in the local population and calculate the individuals’ gene scores. The students are then asked to explain the impact of the genotype (or gene score) on the resulting patient phenotype (i.e. the functional significance of the genotype). The first case involves a breast cancer survivor support group in which patients taking Taxol discuss lack of adequate pain relief from opioids and the potential impact of concomitant use of natural compounds/supplements on drug metabolism. The second case involves a patient presenting with recurrent stroke-like symptoms despite being on the anticoagulant medication clopidogrel. The patient is initially suspected to be non-compliant, but is later determined to be a poor metabolizer of the anticoagulant clopidogrelto its active form thus decreasing its efficacy. The expertise of the IUSM Medical Genetics research faculty was leveraged to provide a large data set of cytochrome P450 genes and cognate alleles. The selection of cytochrome P450 was based upon delivering content focused on the biochemistry of the enzyme system and provided an opportunity to highlight the drug interaction database available through IUSM Clinical Pharmacology (The FlockhartTable™ ; https://drug-interactions.medicine.iu.edu/). The addition of natural compounds was to draw students’ attention to the Natural Medicines database, which is the recommended source for evidence-based data on complementary and alternative medicine. Natural Medicines is available through the Ruth Lilly Medical Library and can be searched by substance or condition. It provides both a summary of the literature available on substances as well as the level of evidence or quality of studies done on the substance

Gauging Involvement: An Exploratory Survey of Public Health Librarians, Student Literature, and Institutional Repositories

This paper explores the involvement of public health librarians in the deposit of student literature (e.g. theses, journal publications, posters) into university-based institutional repositories. While there is literature about institutional repositories and the roles that librarians can fill related to them, there is limited data as to the actions of librarians in this context. This paper addresses this gap, particularly as it pertains to public health librarians. Twenty-two librarians identified as library liaisons or library contacts for public health students at large, research universities completed a survey on this topic. Overall, the survey results indicate active involvement or interest by public health librarians in the preservation of student scholarly content and imply collaboration with institutional repositories to do so. Further research is needed to determine the extent of librarian involvement in such efforts as well as the degree to which this involvement extends to other groups of librarians.Master of Science in Library Scienc

A Typology for Families At Risk For Child Maltreatment

Extensive research has considered the risk factors that predict child maltreatment outcomes, but little, if any, research has examined risk using methods other than those related to the summation of those risk factors. The primary objective of this study is to evaluate common predictors of child maltreatment from a mixture modeling perspective. This quantitative study uses eight risk factors for child maltreatment and associates them with two outcomes: parent perpetration of child maltreatment and parental attitudes toward sensitivity. The study sample consists of 604 biological mothers from four sites of the Longitudinal Studies of Child Abuse and Neglect (LONGSCAN). Risk factor data was used to create latent classes that represent a risk typology. Individual sites from Baltimore (n = 163), Chicago (n = 176), North Carolina (n = 132), and Seattle (n = 133) were compared to see if a similar risk typology was found for the individual sites when compared to the entire sample. A three latent class risk typology emerged from the entire sample and three of the four LONGSCAN sites. The latent class with the most risk emerged as having the highest percentage of child maltreatment outcomes. With these types of outcomes, multiple risk factors coming together should be the strongest hallmark in the assessment of child maltreatment. Maternal history of victimization was also determined to be an important factor in child maltreatment outcomes, therefore, highlighting the importance of the individual nature of risk as it relates to child maltreatment. In addition, mothers who are younger in age and have low income have lower sensitivity scores. These scores are predictive of less than ideal parenting attitudes. The research presented in this study has been dedicated to taking the popular approach of summing risk factors to a new level of understanding through the use of latent class analysis. These latent classes challenge current thinking on potential risk for children and families. Specifically, mothers with multiple risk factors demonstrate the strongest predictor of child maltreatment outcomes. Also, multiple risk factors need not be present to result in rates of child maltreatment that are higher than what might be expected