A Systematic Review of Dementia-related Stigma Research: Can We Move the Stigma Dial?

Stigma negatively affects individuals with cognitive impairment and dementia. This literature review examined the past decade (January 2004 to December 2015) of world-wide research on dementia-related stigma. Using standard systematic review methodology, original research reports were identified and assessed for inclusion based on defined criteria. Initial database searches yielded 516 articles. After removing duplicates and articles that did not fit inclusion criteria (419), 97 articles were reviewed, yielding a final total of 51 publications, mainly originating in the United States and Europe. Studies were assessed for date, geographic region, sample description, methodology, and key findings. Reports were evaluated on 1) how stigmatizing attitudes may present in various subgroups, including in racial or ethnic minorities; 2) stigma assessment tools; and 3) prospective or experimental approaches to assess or manage stigma. Stigma impedes help-seeking and treatment, and occurs broadly and world wide. Stigmatizing attitudes appear worse among those with limited disease knowledge, those with little contact with people with dementia, in men, in younger individuals, and in the context of ethnicity and culture. In some cases, healthcare providers may have stigmatizing attitudes. In research studies, there does not appear to be consensus on how to best evaluate stigma, and there are few evidence-based stigma reduction approaches. Given the projected increase in persons with dementia globally, there is a critical need for research that better identifies and measures stigma and tests new approaches that can reduce stigmatizing attitudes.

A randomized prospective pilot trial of Web-delivered epilepsy stigma reduction communications in young adults.

OBJECTIVE: Epilepsy is a common neurological condition that is often associated with stigmatizing attitudes and negative stereotypes among the general public. This randomized controlled trial (RCT) tested two new communication approaches targeting epilepsy stigma versus an education-alone approach. METHODS: Two brief stigma-reduction videos were developed, informed by community stakeholder input; one highlighted role competency in people with epilepsy; the other highlighted social inclusion of people with epilepsy. A control video was also developed. A Web-based survey using a prospective RCT design compared effects of experimental videos and control on acceptability, perceived impact, epilepsy knowledge, and epilepsy stigma. Epilepsy knowledge and stigma were measured with the Epilepsy Knowledge Questionnaire (EKQ) and Attitudes and Beliefs about Living with Epilepsy (ABLE), respectively. RESULTS: A total of 295 participants completed the study. Mean age was 23.1 (standard deviation = 3.27) years; 59.0% were male, and 71.4% were white. Overall, respondents felt videos impacted their epilepsy attitudes. EKQ scores were similar across videos, with a trend for higher knowledge in experimental videos versus control (p = 0.06). The role competency and control videos were associated with slightly better perceived impact on attitudes. There were no differences between videos on ABLE scores (p = 0.568). There were subgroup differences suggesting that men, younger individuals, whites, and those with personal epilepsy experience had more stigmatizing attitudes. SIGNIFICANCE: This RCT tested communication strategies to improve knowledge and attitudes about epilepsy. Although this initial effort will require follow-up, we have demonstrated the acceptability, feasibility, and potential of novel communication strategies to target epilepsy stigma, and a Web-based approach for assessing them.

Correlates of quality of life among individuals with epilepsy enrolled in self-management research: From the US Centers for Disease Control and Prevention Managing Epilepsy Well Network.

RATIONALE: Epilepsy is a chronic neurological condition that causes substantial burden on patients and families. Quality of life may be reduced due to the stress of coping with epilepsy. For nearly a decade, the Centers for Disease Control (CDC) Prevention Research Center's Managing Epilepsy Well (MEW) Network has been conducting research on epilepsy self-management to address research and practice gaps. Studies have been conducted by independent centers across the U.S. Recently, the MEW Network sites, collaboratively, began compiling an integrated database to facilitate aggregate secondary analysis of completed and ongoing studies. In this preliminary analysis, correlates of quality of life in people with epilepsy (PWE) were analyzed from pooled baseline data from the MEW Network. METHODS: For this analysis, data originated from 6 epilepsy studies conducted across 4 research sites and comprised 459 PWE. Descriptive comparisons assessed common data elements that included gender, age, ethnicity, race, education, employment, income, seizure frequency, quality of life, and depression. Standardized rating scales were used for quality of life (QOLIE-10) and for depression (Patient Health Questionnaire, PHQ-9). RESULTS: While not all datasets included all common data elements, baseline descriptive analysis found a mean age of 42 (SD 13.22), 289 women (63.0%), 59 African Americans (13.7%), and 58 Hispanics (18.5%). Most, 422 (92.8%), completed at least high school, while 169 (61.7%) were unmarried, divorced/separated, or widowed. Median 30-day seizure frequency was 0.71 (range 0-308). Depression at baseline was common, with a mean PHQ-9 score of 8.32 (SD 6.04); 69 (29.0%) had depression in the mild range (PHQ-9 score 5-9) and 92 (38.7%) had depression in the moderate to severe range (PHQ-9 score >9). Lower baseline quality of life was associated with greater depressive severity (p<.001), more frequent seizures (p<.04) and lower income (p<.05). CONCLUSIONS: The MEW Network Integrated Database offers a unique opportunity for secondary analysis of data from multiple community-based epilepsy research studies. While findings must be tempered by potential sample bias, i.e. a relative under-representation of men and relatively small sample of some racial/ethnic subgroups, results of analyses derived from this first integrated epilepsy self-management database have potential to be useful to the field. Associations between depression severity and lower QOL in PWE are consistent with previous studies derived from clinical samples. Self-management efforts that focus on mental health comorbidity and seizure control may be one way to address modifiable factors that affect quality of life in PWE.

Epilepsy misconceptions and stigma reduction: Current status in Western countries.

OBJECTIVE: This systematized literature review identified reports describing epilepsy misconceptions in the developed Western countries and research interventions focused on reducing these misconceptions. MATERIALS AND METHODS: English language publications from January 2004 to January 2015 that described original research conducted in Europe, North/Central/South America, or Australia on misconceptions about epilepsy among the general public were used for this review. RESULTS: Eighty-one publications were selected. Most studies were conducted in the Americas (N=30) and Europe (N=31). Misconceptions and attitudes about epilepsy were assessed among clinical providers (N=9), family members of people with epilepsy (PWE) (N=5), teachers (N=11), students (N=22), and the general public (N=25). Most studies used structured questionnaires, sometimes adding open-ended questions. Misconceptions reflected socially exclusionary attitudes directed at PWE, ignorance about treatment, and overgeneralizations that are stigmatizing when applied to all PWE. Misconceptions were more prevalent in those with less education, lower socioeconomic status, and no exposure to PWE. There were only 12 intervention studies. While intervention studies were generally effective in improving attitudes, many were targeted to healthcare and education settings, were time-intensive, and impractical for broad general population implementation. None incorporated newer technology-based strategies regarding effective health communication approaches. CONCLUSIONS: Types of epilepsy misconceptions were similar in reports published over the last decade, although most referred to misconceptions that have already been previously described. Existing questionnaires may fail to identify more subtle forms of current misconceptions and negative attitudes. Few interventional studies specifically target epilepsy stigma. Practical and broad scalable approaches to destigmatize epilepsy may help reduce misconceptions.

Targeted Self-Management of Epilepsy and Mental Illness for individuals with epilepsy and psychiatric comorbidity.

OBJECTIVES: Serious mental illness is disproportionately common in people with epilepsy and contributes to complications and mortality. Few care approaches specifically target individuals who have epilepsy and severe mental illness. We used an iterative process to refine an existing intervention and tested the novel intervention, Targeted Self-Management for Epilepsy and Mental Illness (TIME) in individuals with epilepsy and comorbid mental illness (E-MI). METHODS: The TIME intervention was developed with input from a community advisory board and then tested for feasibility, acceptability, and preliminary efficacy in people with E-MI, using a 16-week prospective, randomized controlled design comparing TIME (N=22) vs. treatment as usual (TAU, N=22). Primary outcome was change in depressive symptoms, assessed by the Montgomery Asberg Depression Rating Scale (MADRS). Secondary assessments included global psychiatric symptom severity, seizure frequency, sleep patterns, quality of life, stigma, social support, and self-efficacy. RESULTS: There were 44 individuals enrolled, mean age 48.25 (SD=11.82) with 25 (56.8%) African-Americans. The majority (N=31, 70.5%) were unemployed, and most (N=41, 95.5%) had annual income

Electronic medical record analysis of emergency room visits and hospitalizations in individuals with epilepsy and mental illness comorbidity.

OBJECTIVE: Epilepsy is a chronic neurological condition that significantly increases risk of injury and premature death. Rates of mental illness are also disproportionately high in those with epilepsy, which can be attributed in part to the stress and stigma associated with epilepsy. Psychiatric conditions generally complicate the management of epilepsy, and understanding how psychiatric comorbidity affects use of crisis-based health resources could inform care approaches that help improve epilepsy care. To better understand effects of psychiatric comorbidity on epilepsy burden, we conducted a 5-year retrospective analysis of data from a large safety-net healthcare network and compared the occurrence of negative health events (NHEs), defined as emergency department (ED) visits and hospitalizations, among individuals with epilepsy and mental illness (E-MI) vs. those with epilepsy alone (E). METHODS: Electronic health record (EHR) data from a large Midwestern U.S. safety-net healthcare system were queried to identify a study population of adults ≥18years with a diagnosis of epilepsy, with or without mental illness. We assessed demographic and clinical characteristics for each of the 5years and compared NHEs between subgroups with E-MI vs. E. An additional analysis focused on those individuals who remained in the healthcare system over the entire 5-year study time frame (January, 2010 to December, 2014). Annual and cumulative NHE counts and hospital length of stay for individuals with E-MI and E were assessed, as were hospital discharge diagnoses. RESULTS: The number (approximately 2000) and demographic characteristics of individuals with epilepsy who received care each year of the study period was relatively consistent. In 2014, mean age of individuals with epilepsy was 48 (range: 18-95), 48.2% were women, 51.5% were White, 37.9% were African-American, and 8.6% were Hispanic. In 2014, there were 1616 (78.6%) individuals in the subgroup with E and 439 (21.4%) in the subgroup with E-MI. Most clinical and demographic variables between the subgroups with E-MI and E were similar, except that individuals with E-MI were less likely to be employed or commercially insured. Overall, NHEs were common, with over 1/4 (27.5%) of all individuals with epilepsy having an ED visit during the year, 13.7% having hospitalization, and 34.2% having either an ED visit or hospitalization. Individuals with E-MI had significantly more NHEs compared to individuals with epilepsy only, as evidenced by higher rates of any NHE (p<.001), ED visits (p<.001), and hospitalizations (p<.001). The cumulative differential in ED and hospital use between subgroups with E-MI and E was substantial over a 5-year time period. While most NHEs were directly related to seizures for the overall group, substance-use complications appeared as a top reason for hospitalization only in the group with E-MI. CONCLUSIONS: Individuals with E-MI made up just over 20% of all people with epilepsy in a safety-net system and had higher rates of NHEs than those without mental illness. Better and earlier identification of individuals with E-MI, assistance with self-management including helping individuals to optimize ambulatory care settings as opposed to the ED, and treatment for substance use disorders could eventually reduce NHEs in this vulnerable subgroup of individuals with epilepsy.

Comparison of common data elements from the Managing Epilepsy Well (MEW) Network integrated database and a well-characterized sample with nonepileptic seizures.

INTRODUCTION: Epilepsy and psychogenic nonepileptic seizures (PNES) are both chronic illnesses characterized by similar and overlapping clinical features. A limited number of studies comparing people with epilepsy (PWE) and patients with PNES that address determinants of health outcomes exist. We conducted an analysis using a well-characterized sample of people with PNES and the Managing Epilepsy Well (MEW) Network integrated data, comparing descriptive data on samples with epilepsy and with documented PNES. Based on the pooled data, we hypothesized that people with PNES would have worse QOL and higher depression severity than PWE. MATERIAL AND METHODS: We used data from the MEW Network integrated database involving select epilepsy self-management studies comprising 182 PWE and 305 individuals with documented PNES from the Rhode Island Hospital Neuropsychiatry and Behavioral Neurology Clinic. We conducted a matched, case-control study assessing descriptive comparisons on 16 common data elements that included gender, age, ethnicity, race, education, employment, income, household composition, relationship status, age at seizure onset, frequency of seizures, seizure type, health status, healthy days, quality of life, and depression. Standardized rating scales for depression and quality of life were used. RESULTS: Median seizure frequency in the last 30days for PWE was 1, compared to 15 for patients with PNES (p<0.05). People with epilepsy had a QOLIE-10 mean score of 3.00 (SD: 0.91) compared to 3.54 (0.88) (p<0.01) for patients with PNES. Depression severity was moderate to severe in 7.7% of PWE compared to 34.1% (p<0.05) of patients with PNES. DISCUSSION: People with epilepsy in selected MEW Network programs are fairly well educated, mostly women, with few minorities and low monthly seizure rates. Those with PNES, however, have higher levels of not working/on disability and had more frequent seizures, higher depression severity, and worse QOL. These differences were present despite demographics that are largely similar in both groups, illustrating that other determinants of illness may influence PNES.

Comparison of combined venous and arterial thrombolysis with primary arterial therapy using recombinant tissue plasminogen activator in acute ischemic stroke.

OBJECTIVE: We sought to compare the safety and efficacy of combined intravenous (IV) and intra-arterial (IA) thrombolysis with primary IA therapy using tissue plasminogen activator for acute ischemic stroke presenting within 6 hours of symptom onset. METHODS: We performed quasirandomization of a single institution's prospectively collected stroke database, comparing IV/IA (0.6 mg/kg IV < or = 60 mg, followed by 0.3 mg/kg IA < or = 30 mg) versus primary IA. Outcome measures include 90-day modified Rankin scale score, mortality, symptomatic intracerebral hemorrhage, and recanalization rates. Statistical analysis was performed using bivariate and propensity score methods. RESULTS: Of 1057 patients, 41 patients were treated with IV/IA, and 55 with IA. There was significant difference in time to treatment (mean of 151 minutes for the combined group and 261 minutes for the IA, P < .0001) and arterial tissue plasminogen activator dose (17.5 mg for IV/IA v 22.8 mg for IA only, P = .05). Propensity score matching yielded 25 patients in each group. Symptomatic intracerebral hemorrhage rate was 12% in each group. Mortality was 20% in the IV/IA group versus 16% in the IA group (relative risk 1.3 [0.4-4.1], P = .7). More patients in IV/IA group had modified Rankin scale score less than or equal to 2 (odds ratio 1.6 [0.5-5.8], P = .3). Recanalization was 64% with IV/IA versus 48% with IA (odds ratio 1.9 [0.5-7.0], P = .3). CONCLUSION: This study demonstrates that both combined IV/IA and primary IA recombinant tissue plasminogen activator therapy is feasible and safe in the treatment of acute ischemic stroke. Combined IV/IA therapy may be associated with an improvement in clinical outcome without a significant increase in the risk of symptomatic intracerebral hemorrhage and mortality compared with IA therapy.

A Targeted Self-Management Approach for Reducing Stroke Risk Factors in African American Men Who Have Had a Stroke or Transient Ischemic Attack.

PURPOSE: This study compared a novel self-management (TargetEd MAnageMent Intervention [TEAM]) versus treatment as usual (TAU) to reduce stroke risk in African American (AA) men. DESIGN: Six-month prospective randomized controlled trial with outcomes evaluated at baseline, 3 months, and 6 months. SETTING: Academic health center. PARTICIPANTS: Thirty-eight (age < 65) AA men who had a stroke or transient ischemic attack and a Barthel index score of >60 were randomly assigned to TEAM (n = 19) or TAU (n = 19). INTERVENTION: Self-management training, delivered in 1 individual and 4 group sessions (over 3 months). MEASURES: Blood pressure, glycosylated hemoglobin (HbA1c), lipids, medication adherence, weight, and standardized measures of health behaviors (diet, exercise, smoking, substances), depression, and quality of life. Qualitative assessments evaluated the perspectives of TEAM participants. ANALYSIS: T tests for paired differences and nonparametric tests. Thematic content qualitative analysis. RESULTS: Mean age was 52.1 (standard deviation [SD] = 7.4) and mean body mass index was 31.4 (SD = 7.4). Compared to TAU, TEAM participants had significantly lower mean systolic blood pressure by 24 weeks, and there was also improvement in HbA1c and high-density lipoprotein cholesterol ( P = .03). Other biomarker and health behaviors were similar between groups. Qualitative results suggested improved awareness of risk factors as well as positive effects of group support.

Demographic and Clinical Correlates of Seizure Frequency: Findings from the Managing Epilepsy Well Network Database.

BACKGROUND AND PURPOSE: Epilepsy is a chronic neurological disease that represents a tremendous burden on both patients and society in general. Studies have addressed how demographic variables, socioeconomic variables, and psychological comorbidity are related to the quality of life (QOL) of people with epilepsy (PWE). However, there has been less focus on how these factors may differ between patients who exhibit varying degrees of seizure control. This study utilized data from the Managing Epilepsy Well (MEW) Network of the Centers for Disease Control and Prevention with the aim of elucidating differences in demographic variables, depression, and QOL between adult PWE. METHODS: Demographic variables, depression, and QOL were compared between PWE who experience clinically relevant differences in seizure occurrence. RESULTS: Gender, ethnicity, race, education, income, and relationship status did not differ significantly between the seizure-frequency categories (p>0.05). People with worse seizure control were significantly younger (p=0.039), more depressed (as assessed using the Patient Health Questionnaire) (p=0.036), and had lower QOL (as determined using the 10-item Quality of Life in Epilepsy for Adults scale) (p<0.001). CONCLUSIONS: The present results underscore the importance of early screening, detection, and treatment of depression, since these factors relate to both seizure occurrence and QOL in PWE.

Barriers and facilitators to epilepsy self-management for patients with physical and psychological co-morbidity.

Objectives This exploratory study identifies barriers and facilitators to self-management to inform future epilepsy self-management interventions for persons who have epilepsy complicated by co-morbid mental health conditions and serious medical events. Methods Focus group methods were used in a series of community advisory board meetings. Analysis was conducted using a thematic, constant comparative approach aiming to describe the range of barriers and facilitators salient to participants. There were a total of 22 participants, including 8 health professionals, 9 patients with epilepsy, and 5 care partners. Mean age was 49.1 (SD = 11.0, range 32-69), 11 (50%) were female, and 11 (50%) were male. For those with epilepsy, mean years having epilepsy was 24.7 (SD = 19.9, range 1-58 years). Results Individual psychological barriers (mental illness, fatigue, and psychological distress) prominently interfered with health behaviors. Community and family barriers included stigma, lack of epilepsy knowledge, and poor social support. Facilitators included planning for seizures, learning about medications, stress management, socializing with others, and talking with other epilepsy patients. Discussion Qualitative evidence in this study suggests a linkage between social integration and positive health behaviors. Future efforts to embed patients with epilepsy and their caregivers into clinical care processes could offset barriers and enhance facilitators.

Modifiable lifestyle risk factors for stroke among a high risk hypertensive population in Greater Kampala, Uganda; a cross-sectional study.

OBJECTIVE: To describe the modifiable lifestyle risk factors for stroke among a high risk population for stroke. Africa suffers from rapid population growth, adoption of harmful western diets, and increased prevalence of hypertension and obesity. RESULTS: A total of 440 study participants were screened and 87 individuals with hypertension plus at least one other known stroke risk factor were enrolled. The prevalence of hypertension and diabetes mellitus in the screened population was 19.7 and 1.8%, respectively. Among those with hypertension only 2.3% (2/87) had ever had serum lipid assessment. Seventy-two percent (68/87) had very high serum LDL-cholesterol, while 33.3% (29/87) had low levels of HDL-cholesterol, and 67.8% had mean blood pressures greater than 160/100 mmHg and 40% (35/87) were obese, with a BMI ≥30. Targeting individuals with modifiable stroke risk factors and implementing self-management programs may be a way to reduce stroke burden in Uganda.

A cross-sectional population survey on stroke knowledge and attitudes in Greater Kampala, Uganda.

BACKGROUND: Stroke is a neurological condition with rapidly increasing burden in many low- and middle income countries. Africa is particularly hard-hit due to rapid population growth, patterns of industrialization, adoption of harmful western diets, and increased prevalence of risk factors such as hypertension and obesity. Reducing stroke risk factors and teaching people to respond to stroke warning signs can prevent stroke and reduce burden. However, being able to address gaps in knowledge and improving both preventative and early-response care requires a clear understanding of practical and potentially modifiable topics. In this cross sectional study, we assessed the knowledge and attitudes among an urban population residing within the greater Kampala, Uganda. METHODS: A population cross sectional survey was conducted in urban Mukono, district, central Uganda. Through the systematic sampling method, data were gathered from 440 adult participants who were interviewed about selected aspects of stroke knowledge, attitudes and perception using a pretested structured questionnaire. RESULTS: A total of 440 study participants were enrolled. The leading risk factors for stroke identified by the participants were stress (75.7%) and hypertension (45.2%) respectively. Only two (0.5%) of the study participants identified cigarette smoking as a stroke risk factor. Individuals with hypertension have poor knowledge regarding stroke in spite their high risk for stroke. CONCLUSION: Stroke knowledge is poor while, stress and hypertension are the leading perceived risk factors in our settings. While stress is contributing factor, hypertension is likely a more amenable and practical intervention target. Targeting individuals with stroke risk factors to increase stroke knowledge and education is crucial for engagement in healthcare. Implementing a self-management program to support and motivate this high-risk group as well as adopting healthy life-styles may be a way to reduce stroke burden in Uganda.

A randomized trial of individual versus group-format exercise and self-management in individuals with Parkinson's disease and comorbid depression.

BACKGROUND: Depression is common in people with Parkinson's disease (PD), and exercise is known to improve depression and PD. However, lack of motivation and low self-efficacy can make exercise difficult for people with PD and comorbid depression (PD-Dep). A combined group exercise and chronic disease self-management (CDSM) program may improve the likeli-hood that individuals will engage in exercise and will show a reduction in depression symptoms. The purpose of this study was to compare changes in depression in PD-Dep between individual versus group exercise plus CDSM and to examine participant adherence and perception of the interventions. METHODS: Participants (N=30) were randomized to either Enhanced EXerCisE thErapy for PD (EXCEED; group CDSM and exercise) or self-guided CDSM plus exercise. Outcomes were change in depression assessed with the Montgomery-Asberg Depression Rating Scale (MADRS), cognition, apathy, anxiety, sleep, quality of life, motor function, self-efficacy, and patient satisfaction. RESULTS: Both groups showed significant improvement in MADRS (P<0.001) with no significant group difference. Individuals in EXCEED group enjoyed the group dynamics but noted difficulty with the fixed-time sessions. CONCLUSION: Both group CDSM plus exercise and self-guided CDSM plus exercise can improve depression in PD-Dep. These findings suggest that development of a remotely delivered group-based CDSM format plus manualized exercise program could be useful for this population.

Enhanced Exercise Therapy in Parkinson's disease: A comparative effectiveness trial.

OBJECTIVES: Exercise can improve motor function in people with Parkinson's disease but depression reduces the motivation to participate in regular exercise. The aim of this study was to develop a novel Enhanced Exercise Therapy program that uses manual-driven guided exercise and peer-facilitated psychoeducation for individuals with Parkinson's disease and depression. DESIGN: 24 week randomized controlled design. METHODS: Thirty individuals were randomized to Enhanced Exercise Therapy or self-guided therapy, and evaluated at baseline, 12-weeks and at 24-weeks. Enhanced Exercise Therapy included group exercise and group psychoeducation for 12 weeks. Between 13 and 24 weeks, individuals had access to the fitness facility but group sessions were not held. Self-guided therapy included written guidelines for a self-paced exercise program and psychoeducation. Primary outcome measures included the number of exercise sessions and International Physical Activity Questionnaire score. Secondary measures included resting heart rate, supine blood pressure, estimated VO2max and incidence of orthostatic hypotension. RESULTS: Twenty four individuals completed the study (80% retention) and both groups attended similar number of exercise sessions. There were no significant changes in cardiovascular fitness measures but there was a significant increase in the amount of physical activity in the Enhanced Exercise Therapy group and a decrease in the self-guided therapy group during the post-intervention period. CONCLUSIONS: Enhanced Exercise Therapy appears to promote engagement in an exercise program and more physical activity, even after group sessions were concluded in individuals with Parkinson's disease and depression.

Managing information well: Toward an ontology-driven informatics platform for data sharing and secondary use in epilepsy self-management research centers.

Epilepsy is a chronic neurological condition that requires active self-management to reduce personal and population burden. The Managing Epilepsy Well Network, funded by the US Centers for Disease Control and Prevention, conducts research on epilepsy self-management. There is an urgent need to develop an integrated informatics platform to maximize the secondary use of existing Managing Epilepsy Well Network data. We have implemented multiple steps to develop an informatics platform, including: (a) a survey of existing outcome data, (b) identification of common data elements, and (c) an integrated database using an epilepsy domain ontology to reconcile data heterogeneity. The informatics platform enables assessment of epilepsy self-management samples by site and in aggregate to support data interpretations for clinical care and ongoing epilepsy self-management research. The Managing Epilepsy Well informatics platform is expected to help advance epilepsy self-management, improve health outcomes, and has potential application in other thematic research networks.

Insight: An ontology-based integrated database and analysis platform for epilepsy self-management research.

We present Insight as an integrated database and analysis platform for epilepsy self-management research as part of the national Managing Epilepsy Well Network. Insight is the only available informatics platform for accessing and analyzing integrated data from multiple epilepsy self-management research studies with several new data management features and user-friendly functionalities. The features of Insight include, (1) use of Common Data Elements defined by members of the research community and an epilepsy domain ontology for data integration and querying, (2) visualization tools to support real time exploration of data distribution across research studies, and (3) an interactive visual query interface for provenance-enabled research cohort identification. The Insight platform contains data from five completed epilepsy self-management research studies covering various categories of data, including depression, quality of life, seizure frequency, and socioeconomic information. The data represents over 400 participants with 7552 data points. The Insight data exploration and cohort identification query interface has been developed using Ruby on Rails Web technology and open source Web Ontology Language Application Programming Interface to support ontology-based reasoning. We have developed an efficient ontology management module that automatically updates the ontology mappings each time a new version of the Epilepsy and Seizure Ontology is released. The Insight platform features a Role-based Access Control module to authenticate and effectively manage user access to different research studies. User access to Insight is managed by the Managing Epilepsy Well Network database steering committee consisting of representatives of all current collaborating centers of the Managing Epilepsy Well Network. New research studies are being continuously added to the Insight database and the size as well as the unique coverage of the dataset allows investigators to conduct aggregate data analysis that will inform the next generation of epilepsy self-management studies.

Insight: Semantic Provenance and Analysis Platform for Multi-center Neurology Healthcare Research.

Insight is a Semantic Web technology-based platform to support large-scale secondary analysis of healthcare data for neurology clinical research. Insight features the novel use of: (1) provenance metadata, which describes the history or origin of patient data, in clinical research analysis, and (2) support for patient cohort queries across multiple institutions conducting research in epilepsy, which is the one of the most common neurological disorders affecting 50 million persons worldwide. Insight is being developed as a healthcare informatics infrastructure to support a national network of eight epilepsy research centers across the U.S. funded by the U.S. Centers for Disease Control and Prevention (CDC). This paper describes the use of the World Wide Web Consortium (W3C) PROV recommendation for provenance metadata that allows researchers to create patient cohorts based on the provenance of the research studies. In addition, the paper describes the use of descriptive logic-based OWL2 epilepsy ontology for cohort queries with "expansion of query expression" using ontology reasoning. Finally, the evaluation results for the data integration and query performance are described using data from three research studies with 180 epilepsy patients. The experiment results demonstrate that Insight is a scalable approach to use Semantic provenance metadata for context-based data analysis in healthcare informatics.