Analysis of Federal Policy on Public Access to Scientific Research Data

Presentation from the MARAC conference in Pittsburgh, PA on April 14–16, 2016. S13 - Student Poster Session; Analysis of Federal Policy on Public Access to Scientific Research Data

A Sense of Wonder: Enhancing Access to Folktales through Task and Facet Analysis

Discusses the approach taken in Phase 1 of a three-phase project Folktales, Facets and FRBR [funded by a grant from OCLC/ALISE]. This project works with the special collection of folktales at the Center for Children’s Books (CCB) at the University of Illinois at Urbana-Champaign, and the scholars who use this collection. The project aims to enhance the effectiveness and efficiency of folktale access through deep understanding of user needs. Phase 1 included facet analysis of the bibliographic records for a sample of 100 folktale books in the CCB, and task analysis of interviews with four CCB-affiliated faculty. Describes the information tasks, information seeking obstacles, and desired features for a discovery and access tool related to folktales for this initial group of scholarly users of folktales.

Volunteering for the Commonwealth Games: what can realist synthesis contribute to health policy making?

The aim of this thesis was to investigate, using the real-time test case of the 2014 Commonwealth Games, whether the realist synthesis methodology could contribute to the making of health policy in a meaningful way. This was done by looking at two distinct research questions: first, whether realist synthesis could contribute new insights to the health policymaking process, and second, whether the 2014 Commonwealth Games volunteer programme was likely to have any significant, measurable, impact on health inequalities experienced by large sections of the host population. The 2014 Commonwealth Games legacy laid out ambitious plans for the event, in which it was anticipated that it would provide explicit opportunities to impact positively on health inequalities. By using realist synthesis to unpick the theories underpinning the volunteer programme, the review identifies the population subgroups for whom the programme was likely to be successful, how this could be achieved and in what contexts. In answer to the first research question, the review found that while realist methods were able to provide a more nuanced exposition of the impacts of the Games volunteer programme on health inequalities than previous traditional reviews had been able to provide, there were several drawbacks to using the method. It was found to be resource-intensive and complex, encouraging the exploration of a much wider set of literatures at the expense of an in-depth grasp of the complexities of those literatures. In answer to the second research question, the review found that the Games were, if anything, likely to exacerbate health inequalities because the programme was designed in such a way that individuals recruited to it were most likely to be those in least need of the additional mental and physical health benefits that Games volunteering was designed to provide. The following thesis details the approach taken to investigate both the realist approach to evidence synthesis and the likelihood that the 2014 Games volunteer programme would yield the expected results.

Identifying health inequalities in individuals with major mental illness (MMI) using routine data

Abstract and Summary of Thesis: Background: Individuals with Major Mental Illness (such as schizophrenia and bipolar disorder) experience increased rates of physical health comorbidity compared to the general population. They also experience inequalities in access to certain aspects of healthcare. This ultimately leads to premature mortality. Studies detailing patterns of physical health comorbidity are limited by their definitions of comorbidity, single disease approach to comorbidity and by the study of heterogeneous groups. To date the investigation of possible sources of healthcare inequalities experienced by individuals with Major Mental Illness (MMI) is relatively limited. Moreover studies detailing the extent of premature mortality experienced by individuals with MMI vary both in terms of the measure of premature mortality reported and age of the cohort investigated, limiting their generalisability to the wider population. Therefore local and national data can be used to describe patterns of physical health comorbidity, investigate possible reasons for health inequalities and describe mortality rates. These findings will extend existing work in this area. Aims and Objectives: To review the relevant literature regarding: patterns of physical health comorbidity, evidence for inequalities in physical healthcare and evidence for premature mortality for individuals with MMI. To examine the rates of physical health comorbidity in a large primary care database and to assess for evidence for inequalities in access to healthcare using both routine primary care prescribing data and incentivised national Quality and Outcome Framework (QOF) data. Finally to examine the rates of premature mortality in a local context with a particular focus on cause of death across the lifespan and effect of International Classification of Disease Version 10 (ICD 10) diagnosis and socioeconomic status on rates and cause of death. Methods: A narrative review of the literature surrounding patterns of physical health comorbidity, the evidence for inequalities in physical healthcare and premature mortality in MMI was undertaken. Rates of physical health comorbidity and multimorbidity in schizophrenia and bipolar disorder were examined using a large primary care dataset (Scottish Programme for Improving Clinical Effectiveness in Primary Care (SPICE)). Possible inequalities in access to healthcare were investigated by comparing patterns of prescribing in individuals with MMI and comorbid physical health conditions with prescribing rates in individuals with physical health conditions without MMI using SPICE data. Potential inequalities in access to health promotion advice (in the form of smoking cessation) and prescribing of Nicotine Replacement Therapy (NRT) were also investigated using SPICE data. Possible inequalities in access to incentivised primary healthcare were investigated using National Quality and Outcome Framework (QOF) data. Finally a pre-existing case register (Glasgow Psychosis Clinical Information System (PsyCIS)) was linked to Scottish Mortality data (available from the Scottish Government Website) to investigate rates and primary cause of death in individuals with MMI. Rate and primary cause of death were compared to the local population and impact of age, socioeconomic status and ICD 10 diagnosis (schizophrenia vs. bipolar disorder) were investigated. Results: Analysis of the SPICE data found that sixteen out of the thirty two common physical comorbidities assessed, occurred significantly more frequently in individuals with schizophrenia. In individuals with bipolar disorder fourteen occurred more frequently. The most prevalent chronic physical health conditions in individuals with schizophrenia and bipolar disorder were: viral hepatitis (Odds Ratios (OR) 3.99 95% Confidence Interval (CI) 2.82-5.64 and OR 5.90 95% CI 3.16-11.03 respectively), constipation (OR 3.24 95% CI 3.01-3.49 and OR 2.84 95% CI 2.47-3.26 respectively) and Parkinson’s disease (OR 3.07 95% CI 2.43-3.89 and OR 2.52 95% CI 1.60-3.97 respectively). Both groups had significantly increased rates of multimorbidity compared to controls: in the schizophrenia group OR for two comorbidities was 1.37 95% CI 1.29-1.45 and in the bipolar disorder group OR was 1.34 95% CI 1.20-1.49. In the studies investigating inequalities in access to healthcare there was evidence of: under-recording of cardiovascular-related conditions for example in individuals with schizophrenia: OR for Atrial Fibrillation (AF) was 0.62 95% CI 0.52 - 0.73, for hypertension 0.71 95% CI 0.67 - 0.76, for Coronary Heart Disease (CHD) 0.76 95% CI 0.69 - 0.83 and for peripheral vascular disease (PVD) 0.83 95% CI 0.72 - 0.97. Similarly in individuals with bipolar disorder OR for AF was 0.56 95% CI 0.41-0.78, for hypertension 0.69 95% CI 0.62 - 0.77 and for CHD 0.77 95% CI 0.66 - 0.91. There was also evidence of less intensive prescribing for individuals with schizophrenia and bipolar disorder who had comorbid hypertension and CHD compared to individuals with hypertension and CHD who did not have schizophrenia or bipolar disorder. Rate of prescribing of statins for individuals with schizophrenia and CHD occurred significantly less frequently than in individuals with CHD without MMI (OR 0.67 95% CI 0.56-0.80). Rates of prescribing of 2 or more anti-hypertensives were lower in individuals with CHD and schizophrenia and CHD and bipolar disorder compared to individuals with CHD without MMI (OR 0.66 95% CI 0.56-0.78 and OR 0.55 95% CI 0.46-0.67, respectively). Smoking was more common in individuals with MMI compared to individuals without MMI (OR 2.53 95% CI 2.44-2.63) and was particularly increased in men (OR 2.83 95% CI 2.68-2.98). Rates of ex-smoking and non-smoking were lower in individuals with MMI (OR 0.79 95% CI 0.75-0.83 and OR 0.50 95% CI 0.48-0.52 respectively). However recorded rates of smoking cessation advice in smokers with MMI were significantly lower than the recorded rates of smoking cessation advice in smokers with diabetes (88.7% vs. 98.0%, p<0.001), smokers with CHD (88.9% vs. 98.7%, p<0.001) and smokers with hypertension (88.3% vs. 98.5%, p<0.001) without MMI. The odds ratio of NRT prescription was also significantly lower in smokers with MMI without diabetes compared to smokers with diabetes without MMI (OR 0.75 95% CI 0.69-0.81). Similar findings were found for smokers with MMI without CHD compared to smokers with CHD without MMI (OR 0.34 95% CI 0.31-0.38) and smokers with MMI without hypertension compared to smokers with hypertension without MMI (OR 0.71 95% CI 0.66-0.76). At a national level, payment and population achievement rates for the recording of body mass index (BMI) in MMI was significantly lower than the payment and population achievement rates for BMI recording in diabetes throughout the whole of the UK combined: payment rate 92.7% (Inter Quartile Range (IQR) 89.3-95.8 vs. 95.5% IQR 93.3-97.2, p<0.001 and population achievement rate 84.0% IQR 76.3-90.0 vs. 92.5% IQR 89.7-94.9, p<0.001 and for each country individually: for example in Scotland payment rate was 94.0% IQR 91.4-97.2 vs. 96.3% IQR 94.3-97.8, p<0.001. Exception rate was significantly higher for the recording of BMI in MMI than the exception rate for BMI recording in diabetes for the UK combined: 7.4% IQR 3.3-15.9 vs. 2.3% IQR 0.9-4.7, p<0.001 and for each country individually. For example in Scotland exception rate in MMI was 11.8% IQR 5.4-19.3 compared to 3.5% IQR 1.9-6.1 in diabetes. Similar findings were found for Blood Pressure (BP) recording: across the whole of the UK payment and population achievement rates for BP recording in MMI were also significantly reduced compared to payment and population achievement rates for the recording of BP in chronic kidney disease (CKD): payment rate: 94.1% IQR 90.9-97.1 vs.97.8% IQR 96.3-98.9 and p<0.001 and population achievement rate 87.0% IQR 81.3-91.7 vs. 97.1% IQR 95.5-98.4, p<0.001. Exception rates again were significantly higher for the recording of BP in MMI compared to CKD (6.4% IQR 3.0-13.1 vs. 0.3% IQR 0.0-1.0, p<0.001). There was also evidence of differences in rates of recording of BMI and BP in MMI across the UK. BMI and BP recording in MMI were significantly lower in Scotland compared to England (BMI:-1.5% 99% CI -2.7 to -0.3%, p<0.001 and BP: -1.8% 99% CI -2.7 to -0.9%, p<0.001). While rates of BMI and BP recording in diabetes and CKD were similar in Scotland compared to England (BMI: -0.5 99% CI -1.0 to 0.05, p=0.004 and BP: 0.02 99% CI -0.2 to 0.3, p=0.797). Data from the PsyCIS cohort showed an increase in Standardised Mortality Ratios (SMR) across the lifespan for individuals with MMI compared to the local Glasgow and wider Scottish populations (Glasgow SMR 1.8 95% CI 1.6-2.0 and Scotland SMR 2.7 95% CI 2.4-3.1). Increasing socioeconomic deprivation was associated with an increased overall rate of death in MMI (350.3 deaths/10,000 population/5 years in the least deprived quintile compared to 794.6 deaths/10,000 population/5 years in the most deprived quintile). No significant difference in rate of death for individuals with schizophrenia compared with bipolar disorder was reported (6.3% vs. 4.9%, p=0.086), but primary cause of death varied: with higher rates of suicide in individuals with bipolar disorder (22.4% vs. 11.7%, p=0.04). Discussion: Local and national datasets can be used for epidemiological study to inform local practice and complement existing national and international studies. While the strengths of this thesis include the large data sets used and therefore their likely representativeness to the wider population, some limitations largely associated with using secondary data sources are acknowledged. While this thesis has confirmed evidence of increased physical health comorbidity and multimorbidity in individuals with MMI, it is likely that these findings represent a significant under reporting and likely under recognition of physical health comorbidity in this population. This is likely due to a combination of patient, health professional and healthcare system factors and requires further investigation. Moreover, evidence of inequality in access to healthcare in terms of: physical health promotion (namely smoking cessation advice), recording of physical health indices (BMI and BP), prescribing of medications for the treatment of physical illness and prescribing of NRT has been found at a national level. While significant premature mortality in individuals with MMI within a Scottish setting has been confirmed, more work is required to further detail and investigate the impact of socioeconomic deprivation on cause and rate of death in this population. It is clear that further education and training is required for all healthcare staff to improve the recognition, diagnosis and treatment of physical health problems in this population with the aim of addressing the significant premature mortality that is seen. Conclusions: Future work lies in the challenge of designing strategies to reduce health inequalities and narrow the gap in premature mortality reported in individuals with MMI. Models of care that allow a much more integrated approach to diagnosing, monitoring and treating both the physical and mental health of individuals with MMI, particularly in areas of social and economic deprivation may be helpful. Strategies to engage this “hard to reach” population also need to be developed. While greater integration of psychiatric services with primary care and with specialist medical services is clearly vital the evidence on how best to achieve this is limited. While the National Health Service (NHS) is currently undergoing major reform, attention needs to be paid to designing better ways to improve the current disconnect between primary and secondary care. This should then help to improve physical, psychological and social outcomes for individuals with MMI.

Barriers to and facilitators of older adult’s adherence to health recommendations: Towards an EngAging two-way health communication

Non-adherence to health recommendations (e.g. medical prescriptions) presents potential costs for healthcare, which could be prevented or mitigated. This is often attributed to a person’s rational choice, to not adhere. However, this may also be determined by individual and contextual factors implied in the recommendations communication process. In accordance, this chapter focuses specifically on barriers to and facilitators of adherence to recommendations and engagement with the healthcare process, particularly concerning the communication between health professionals and patients. For this, the authors present examples of engagement increment through different degrees of participation, from a one-way/directive towards a two-way/engaging communication process. This focuses specifically on a vulnerable population group with increasing healthcare needs: older adults. Future possibilities for two-way engaging communications are discussed, aimed at promoting increased adherence to health recommendations and people’s self-regulation of their own health.

Usefulness of social tagging in organizing and providing access to the web: An analysis of indexing consistency and quality

This dissertation research points out major challenging problems with current Knowledge Organization (KO) systems, such as subject gateways or web directories: (1) the current systems use traditional knowledge organization systems based on controlled vocabulary which is not very well suited to web resources, and (2) information is organized by professionals not by users, which means it does not reflect intuitively and instantaneously expressed users’ current needs. In order to explore users’ needs, I examined social tags which are user-generated uncontrolled vocabulary. As investment in professionally-developed subject gateways and web directories diminishes (support for both BUBL and Intute, examined in this study, is being discontinued), understanding characteristics of social tagging becomes even more critical. Several researchers have discussed social tagging behavior and its usefulness for classification or retrieval; however, further research is needed to qualitatively and quantitatively investigate social tagging in order to verify its quality and benefit. This research particularly examined the indexing consistency of social tagging in comparison to professional indexing to examine the quality and efficacy of tagging. The data analysis was divided into three phases: analysis of indexing consistency, analysis of tagging effectiveness, and analysis of tag attributes. Most indexing consistency studies have been conducted with a small number of professional indexers, and they tended to exclude users. Furthermore, the studies mainly have focused on physical library collections. This dissertation research bridged these gaps by (1) extending the scope of resources to various web documents indexed by users and (2) employing the Information Retrieval (IR) Vector Space Model (VSM) - based indexing consistency method since it is suitable for dealing with a large number of indexers. As a second phase, an analysis of tagging effectiveness with tagging exhaustivity and tag specificity was conducted to ameliorate the drawbacks of consistency analysis based on only the quantitative measures of vocabulary matching. Finally, to investigate tagging pattern and behaviors, a content analysis on tag attributes was conducted based on the FRBR model. The findings revealed that there was greater consistency over all subjects among taggers compared to that for two groups of professionals. The analysis of tagging exhaustivity and tag specificity in relation to tagging effectiveness was conducted to ameliorate difficulties associated with limitations in the analysis of indexing consistency based on only the quantitative measures of vocabulary matching. Examination of exhaustivity and specificity of social tags provided insights into particular characteristics of tagging behavior and its variation across subjects. To further investigate the quality of tags, a Latent Semantic Analysis (LSA) was conducted to determine to what extent tags are conceptually related to professionals’ keywords and it was found that tags of higher specificity tended to have a higher semantic relatedness to professionals’ keywords. This leads to the conclusion that the term’s power as a differentiator is related to its semantic relatedness to documents. The findings on tag attributes identified the important bibliographic attributes of tags beyond describing subjects or topics of a document. The findings also showed that tags have essential attributes matching those defined in FRBR. Furthermore, in terms of specific subject areas, the findings originally identified that taggers exhibited different tagging behaviors representing distinctive features and tendencies on web documents characterizing digital heterogeneous media resources. These results have led to the conclusion that there should be an increased awareness of diverse user needs by subject in order to improve metadata in practical applications. This dissertation research is the first necessary step to utilize social tagging in digital information organization by verifying the quality and efficacy of social tagging. This dissertation research combined both quantitative (statistics) and qualitative (content analysis using FRBR) approaches to vocabulary analysis of tags which provided a more complete examination of the quality of tags. Through the detailed analysis of tag properties undertaken in this dissertation, we have a clearer understanding of the extent to which social tagging can be used to replace (and in some cases to improve upon) professional indexing.

DIY Archives: Enhancing Access to Collections via Free, Open-Source Platforms

Presentation from the MARAC conference in Boston, MA on March 18-21, 2015. S. 24 - DIY Archives: Enhancing Access to Collections via Free, Open-Source Platforms

User Interface Abstraction for enabling TV set based Inclusive Access to the Information Society

199 p.

Polio eradication efforts in regions of geopolitical strife: the Boko Haram threat to efforts in sub-Saharan Africa.

The World Health Organization aims to eradicate wild poliovirus worldwide by the end of 2018. Cameroon and Nigeria, neighboring countries, have been affected by the terrorist and militant activities of the Islamist sect Boko Haram. Impacted regions are mainly the far North of Cameroon and Northern Nigeria. Targets of Boko Haram aggression in these zones include violence against polio workers, disruption of polio immunization campaigns, with consequent reduced access to health care and immunization. In addition to this significant problem, Northern Nigeria has historically seen rejection of polio virus vaccine initiatives. It remains to know how health systems can continue operations against polio in areas where Boko Haram operates. If appropriate measures are not urgently taken, it will be not possible to meet the 2018 goal of polio virus eradication. The response should include specialized immunization activities in conflict zones, will engagement of leaders. Countries should also explore immunization activities by soldiers and military personnel.

Evaluation use within a humanitarian non-governmental organization’s health care user-fee exemption program in West Africa

L’évaluation de l’action humanitaire (ÉAH) est un outil valorisé pour soutenir l’imputabilité, la transparence et l’efficience de programmes humanitaires contribuant à diminuer les inéquités et à promouvoir la santé mondiale. L’EAH est incontournable pour les parties prenantes de programme, les bailleurs de fonds, décideurs et intervenants souhaitant intégrer les données probantes aux pratiques et à la prise de décisions. Cependant, l’utilisation de l’évaluation (UÉ) reste incertaine, l’ÉAH étant fréquemment menée, mais inutilisé. Aussi, les conditions influençant l’UÉ varient selon les contextes et leur présence et applicabilité au sein d’organisations non-gouvernementales (ONG) humanitaires restent peu documentées. Les évaluateurs, parties prenantes et décideurs en contexte humanitaire souhaitant assurer l’UÉ pérenne détiennent peu de repères puisque rares sont les études examinant l’UÉ et ses conditions à long terme. La présente thèse tend à clarifier ces enjeux en documentant sur une période de deux ans l’UÉ et les conditions qui la détermine, au sein d’une stratégie d’évaluation intégrée au programme d’exemption de paiement des soins de santé d’une ONG humanitaire. L’objectif de ce programme est de faciliter l’accès à la santé aux mères, aux enfants de moins de cinq ans et aux indigents de districts sanitaires au Niger et au Burkina Faso, régions du Sahel où des crises alimentaires et économiques ont engendré des taux élevés de malnutrition, de morbidité et de mortalité. Une première évaluation du programme d’exemption au Niger a mené au développement de la stratégie d’évaluation intégrée à ce même programme au Burkina Faso. La thèse se compose de trois articles. Le premier présente une étude d’évaluabilité, étape préliminaire à la thèse et permettant de juger de sa faisabilité. Les résultats démontrent une logique cohérente et plausible de la stratégie d’évaluation, l’accessibilité de données et l’utilité d’étudier l’UÉ par l’ONG. Le second article documente l’UÉ des parties prenantes de la stratégie et comment celle-ci servit le programme d’exemption. L’utilisation des résultats fut instrumentale, conceptuelle et persuasive, alors que l’utilisation des processus ne fut qu’instrumentale et conceptuelle. Le troisième article documente les conditions qui, selon les parties prenantes, ont progressivement influencé l’UÉ. L’attitude des utilisateurs, les relations et communications interpersonnelles et l’habileté des évaluateurs à mener et à partager les connaissances adaptées aux besoins des utilisateurs furent les conditions clés liées à l’UÉ. La thèse contribue à l’avancement des connaissances sur l’UÉ en milieu humanitaire et apporte des recommandations aux parties prenantes de l’ONG.

Non-use of Formal Health Services in Malawi: Perceptions from Non-users

Background The study upon which this paper is based was undertaken to understand users’ and non-users’ perceptions concerning facilitators and barriers to equitable and universal access to health care in resource-poor countries such as Malawi. In this study, non-users of health services were defined as people who were not in need of health services or those who had stopped using them due to significant barriers. Methods A total of 80 interviews with non-users of health services were conducted in Rumphi, Ntchisi, Phalombe and Blantyre Districts of Malawi. Interviews focused on why informants were not using formal health services at the time of data collection. In order to identify non-users, snowballing was used health surveillance assistants, village headmen and community members also helped. One focus group discussion was also conducted with non-users of health services who were members of the Zion Church. Results Informants described themselves as non-users of health services due to several reasons: cost of health services; long distances to health facilities; poor attitude of health workers; belief in the effectiveness of traditional medicines; old age and their failure to walk. Others were non-users due to their disability; hence they could not walk over long distances or could not communicate effectively with health providers. Some of these non-users were complete non-users, namely members of the Zion Church and those who believed in traditional medicine, and they stated that nothing could be done to transform them into users of health services. Other non-users stated that they could become users if their challenges were addressed e.g. for those who were non-users of health services due to poor attitudes of health workers, they stated that if these health workers were transferred they would be able to access health services. Conclusions Public health education targeting both health workers and non-users, ensuring a functional outreach program and addressing other health system challenges such as shortage of drugs and human resources would assist in transforming non-users into users of health services.

Comparison of access to medicines between Klang Valley and East Coast of peninsular Malaysia for children living in poor households

Purpose: To compare access to medicines in children living in poor households (income of USD1/person/day) between urbanised Klang Valley and rural East Coast of Peninsular Malaysia. Methods: A semi-structured interview was conducted with caregivers to determine demographics, access to medicines, knowledge, attitude and practice of parents in obtaining medicines for children. Results: There was no significant difference socio-demographically between poor households in Klang Valley (N = 58) and East Coast (N = 40). The study found that access to medicine for children (N = 325) in the households was adequate, where all households that reported illness in the children over the last 1 month and the last 6 month periods, obtained medicines and 99 % of the children were fully immunized. Qualitative analysis showed that poor households face several barriers in accessing medicines for their children such as financial, transportation, physical and attitudinal. Conclusion: Access to medicines for children living in poor households in both areas were similar and adequate. However, barriers to access remain and further studies are required.