The Political Economy of Information Provision in Developing Democracies

Thesis (Ph.D.)--University of Washington, 2016-07

Using technology to overcome the tyranny of space: information provision and wayfinding.

Urban wayfinding technology offers many possibilities by which older people and mobility-impaired users can overcome the barriers encountered on every-day journeys in the built environment. Previous work has highlighted the extent to which personal mobility and independence are significant determinants of the quality of life amongst both elderly and visually impaired groups. The paper outlines the development of the auditory location finder (ALF), which is a beacon-based local information system designed to enhance the wayfinding activities of these, and potentially other, user-groups in the community. The proposed system provides the user with an audio message, which is obtained on request via a small portable hand unit. The messages inform the user of their whereabouts and give information about the area that they are currently in. The development of the device involves issues such as message content and structure, route choice, orientation, landmarks, clues and the extent of user reliance on technology. Preliminary trials have been carried out in a UK city and have obtained initial user feedback to help underpin the technological development of the device and its potential application. The paper concludes by outlining the importance of new urban technology and the way in which such local information systems can potentially contribute to overcoming particular patterns of exclusion experienced by mobility-impaired groups, such as the visually impaired

Increased hospital-based physical rehabilitation and information provision after intensive care unit discharge: the RECOVER randomized clinical trial.

Importance: critical illness results in disability and reduced health-related quality of life (HRQOL), but the optimum timing and components of rehabilitation are uncertain. Objective: to evaluate the effect of increasing physical and nutritional rehabilitation plus information delivered during the post–intensive care unit (ICU) acute hospital stay by dedicated rehabilitation assistants on subsequent mobility, HRQOL, and prevalent disabilities. Design, Setting, and Participants: a parallel group, randomized clinical trial with blinded outcome assessment at 2 hospitals in Edinburgh, Scotland, of 240 patients discharged from the ICU between December 1, 2010, and January 31, 2013, who required at least 48 hours of mechanical ventilation. Analysis for the primary outcome and other 3-month outcomes was performed between June and August 2013; for the 6- and 12-month outcomes and the health economic evaluation, between March and April 2014. Interventions: during the post-ICU hospital stay, both groups received physiotherapy and dietetic, occupational, and speech/language therapy, but patients in the intervention group received rehabilitation that typically increased the frequency of mobility and exercise therapies 2- to 3-fold, increased dietetic assessment and treatment, used individualized goal setting, and provided greater illness-specific information. Intervention group therapy was coordinated and delivered by a dedicated rehabilitation practitioner. Main Outcomes and Measures: the Rivermead Mobility Index (RMI) (range 0-15) at 3 months; higher scores indicate greater mobility. Secondary outcomes included HRQOL, psychological outcomes, self-reported symptoms, patient experience, and cost-effectiveness during a 12-month follow-up (completed in February 2014). Results: median RMI at randomization was 3 (interquartile range [IQR], 1-6) and at 3 months was 13 (IQR, 10-14) for the intervention and usual care groups (mean difference, −0.2 [95% CI, −1.3 to 0.9; P = .71]). The HRQOL scores were unchanged by the intervention (mean difference in the Physical Component Summary score, −0.1 [95% CI, −3.3 to 3.1; P = .96]; and in the Mental Component Summary score, 0.2 [95% CI, −3.4 to 3.8; P = .91]). No differences were found for self-reported symptoms of fatigue, pain, appetite, joint stiffness, or breathlessness. Levels of anxiety, depression, and posttraumatic stress were similar, as were hand grip strength and the timed Up & Go test. No differences were found at the 6- or 12-month follow-up for any outcome measures. However, patients in the intervention group reported greater satisfaction with physiotherapy, nutritional support, coordination of care, and information provision. Conclusions and Relevance: post-ICU hospital-based rehabilitation, including increased physical and nutritional therapy plus information provision, did not improve physical recovery or HRQOL, but improved patient satisfaction with many aspects of recovery.

Systematic review of interventions to improve the provision of information for adults with primary brain tumors and their caregivers

Background: Adults with primary brain tumors and their caregivers have significant information needs. This review assessed the effect of interventions to improve information provision for adult primary brain tumor patients and/or their caregivers. Methods: We included randomized or nonrandomized trials testing educational interventions that had outcomes of information provision, knowledge, understanding, recall, or satisfaction with the intervention, for adults diagnosed with primary brain tumors and/or their family or caregivers. PubMed, MEDLINE, EMBASE and Cochrane Reviews databases were searched for studies published between 1980 and June 2014. Results: Two randomized controlled, one non-randomized controlled, and 10 single group pre-post trials enrolled more than 411 participants. Five group, four practice/process change and four individual interventions assessed satisfaction (12 studies), knowledge (four studies) or information provision (2 studies). Nine studies reported high rates of satisfaction. Three studies showed statistically significant improvements over time in knowledge and two showed greater information was provided to intervention than control group participants, although statistical testing was not performed. Discussion: The trials assessed intermediate outcomes such as satisfaction, and only 4/13 reported on knowledge improvements. Few trials had a randomized controlled design and risk of bias was either evident or could not be assessed in most domains.

Systematic review of interventions to improve the provision of information for adults with primary brain tumours and their caregivers

Background: Adults with primary brain tumors and their caregivers have significant information needs. This review assessed the effect of interventions to improve information provision for adult primary brain tumor patients and/or their caregivers. Methods: We included randomized or nonrandomized trials testing educational interventions that had outcomes of information provision, knowledge, understanding, recall, or satisfaction with the intervention, for adults diagnosed with primary brain tumors and/or their family or caregivers. PubMed, MEDLINE, EMBASE and Cochrane Reviews databases were searched for studies published between 1980 and June 2014. Results: Two randomized controlled, one non-randomized controlled, and 10 single group pre-post trials enrolled more than 411 participants. Five group, four practice/process change and four individual interventions assessed satisfaction (12 studies), knowledge (four studies) or information provision (2 studies). Nine studies reported high rates of satisfaction. Three studies showed statistically significant improvements over time in knowledge and two showed greater information was provided to intervention than control group participants, although statistical testing was not performed. Discussion: The trials assessed intermediate outcomes such as satisfaction, and only 4/13 reported on knowledge improvements. Few trials had a randomized controlled design and risk of bias was either evident or could not be assessed in most domains.

The provision of health information to stroke patients within an acute hospital setting: What actually happens and how do patients feel about it?

This preliminary study describes how health information is provided to stroke patients in an acute hospital and describes their perceptions of health information provision. A further aim was to determine if patients with aphasia were disadvantaged in their receipt of information. Seven stroke patients were observed in hospital for an average of 102 minutes each and then interviewed using a semi-structured interview. When communication occurred, only 17.5% of communication time was spent providing information. Patients with aphasia received information for less time and on fewer topics. Implications regarding approaches to information provision for patients with and without aphasia are discussed.

Privacy invasive geo-mashups : privacy 2.0 and the limits of first generation information privacy laws

Online technological advances are pioneering the wider distribution of geospatial information for general mapping purposes. The use of popular web-based applications, such as Google Maps, is ensuring that mapping based applications are becoming commonplace amongst Internet users which has facilitated the rapid growth of geo-mashups. These user generated creations enable Internet users to aggregate and publish information over specific geographical points. This article identifies privacy invasive geo-mashups that involve the unauthorized use of personal information, the inadvertent disclosure of personal information and invasion of privacy issues. Building on Zittrain’s Privacy 2.0, the author contends that first generation information privacy laws, founded on the notions of fair information practices or information privacy principles, may have a limited impact regarding the resolution of privacy problems arising from privacy invasive geo-mashups. Principally because geo-mashups have different patterns of personal information provision, collection, storage and use that reflect fundamental changes in the Web 2.0 environment. The author concludes by recommending embedded technical and social solutions to minimize the risks arising from privacy invasive geo-mashups that could lead to the establishment of guidelines for the general protection of privacy in geo-mashups.

Evidence-based practice and information literacy

Evidence-based Practice (EBP) has recently emerged as a topic of discussion amongst professionals within the library and information services (LIS) industry. Simply stated, EBP is the process of using formal research skills and methods to assist in decision making and establishing best practice. The emerging interest in EBP within the library context serves to remind the library profession that research skills and methods can help ensure that the library industry remains current and relevant in changing times. The LIS sector faces ongoing challenges in terms of the expectation that financial and human resources will be managed efficiently, particularly if library budgets are reduced and accountability to the principal stakeholders is increased. Library managers are charged with the responsibility to deliver relevant and cost effective services, in an environment characterised by rapidly changing models of information provision, information access and user behaviours. Consequently they are called upon not only to justify the services they provide, or plan to introduce, but also to measure the effectiveness of these services and to evaluate the impact on the communities they serve. The imperative for innovation in and enhancements to library practice is accompanied by the need for a strong understanding of the processes of review, measurement, assessment and evaluation. In 2001 the Centre for Information Research was commissioned by the Chartered Institute of Library and Information Professionals (CILIP) in the UK to conduct an examination into the research landscape for library and information science. The examination concluded that research is “important for the LIS [library and information science] domain in a number of ways” (McNicol & Nankivell, 2001, p.77). At the professional level, research can inform practice, assist in the future planning of the profession, raise the profile of the discipline, and indeed the reputation and standing of the library and information service itself. At the personal level, research can “broaden horizons and offer individuals development opportunities” (McNicol & Nankivell, 2001, p.77). The study recommended that “research should be promoted as a valuable professional activity for practitioners to engage in” (McNicol & Nankivell, 2001, p.82). This chapter will consider the role of EBP within the library profession. A brief review of key literature in the area is provided. The review considers issues of definition and terminology, highlights the importance of research in professional practice and outlines the research approaches that underpin EBP. The chapter concludes with a consideration of the specific application of EBP within the dynamic and evolving field of information literacy (IL).

The evidence-based development of an intervention to address the information needs of adults newly diagnosed with primary brain tumours and their carers

Adults diagnosed with primary brain tumours often experience physical, cognitive and neuropsychiatric impairments and decline in quality of life. Although disease and treatment-related information is commonly provided to cancer patients and carers, newly diagnosed brain tumour patients and their carers report unmet information needs. Few interventions have been designed or proven to address these information needs. Accordingly, a three-study research program, that incorporated both qualitative and quantitative research methods, was designed to: 1) identify and select an intervention to improve the provision of information, and meet the needs of patients with a brain tumour; 2) use an evidence-based approach to establish the content, language and format for the intervention; and 3) assess the acceptability of the intervention, and the feasibility of evaluation, with newly diagnosed brain tumour patients. Study 1: Structured concept mapping techniques were undertaken with 30 health professionals, who identified strategies or items for improving care, and rated each of 42 items for importance, feasibility, and the extent to which such care was provided. Participants also provided data to interpret the relationship between items, which were translated into ‘maps’ of relationships between information and other aspects of health care using multidimensional scaling and hierarchical cluster analysis. Results were discussed by participants in small groups and individual interviews to understand the ratings, and facilitators and barriers to implementation. A care coordinator was rated as the most important strategy by health professionals. Two items directly related to information provision were also seen as highly important: "information to enable the patient or carer to ask questions" and "for doctors to encourage patients to ask questions". Qualitative analyses revealed that information provision was individualised, depending on patients’ information needs and preferences, demographic variables and distress, the characteristics of health professionals who provide information, the relationship between the individual patient and health professional, and influenced by the fragmented nature of the health care system. Based on quantitative and qualitative findings, a brain tumour specific question prompt list (QPL) was chosen for development and feasibility testing. A QPL consists of a list of questions that patients and carers may want to ask their doctors. It is designed to encourage the asking of questions in the medical consultation, allowing patients to control the content, and amount of information provided by health professionals. Study 2: The initial structure and content of the brain tumour specific QPL developed was based upon thematic analyses of 1) patient materials for brain tumour patients, 2) QPLs designed for other patient populations, and 3) clinical practice guidelines for the psychosocial care of glioma patients. An iterative process of review and refinement of content was undertaken via telephone interviews with a convenience sample of 18 patients and/or carers. Successive drafts of QPLs were sent to patients and carers and changes made until no new topics or suggestions arose in four successive interviews (saturation). Once QPL content was established, readability analyses and redrafting were conducted to achieve a sixth-grade reading level. The draft QPL was also reviewed by eight health professionals, and shortened and modified based on their feedback. Professional design of the QPL was conducted and sent to patients and carers for further review. The final QPL contained questions in seven colour-coded sections: 1) diagnosis; 2) prognosis; 3) symptoms and problems; 4) treatment; 5) support; 6) after treatment finishes; and 7) the health professional team. Study 3: A feasibility study was conducted to determine the acceptability of the QPL and the appropriateness of methods, to inform a potential future randomised trial to evaluate its effectiveness. A pre-test post-test design was used with a nonrandomised control group. The control group was provided with ‘standard information’, the intervention group with ‘standard information’ plus the QPL. The primary outcome measure was acceptability of the QPL to participants. Twenty patients from four hospitals were recruited a median of 1 month (range 0-46 months) after diagnosis, and 17 completed baseline and follow-up interviews. Six participants would have preferred to receive the information booklet (standard information or QPL) at a different time, most commonly at diagnosis. Seven participants reported on the acceptability of the QPL: all said that the QPL was helpful, and that it contained questions that were useful to them; six said it made it easier to ask questions. Compared with control group participants’ ratings of ‘standard information’, QPL group participants’ views of the QPL were more positive; the QPL had been read more times, was less likely to be reported as ‘overwhelming’ to read, and was more likely to prompt participants to ask questions of their health professionals. The results from the three studies of this research program add to the body of literature on information provision for brain tumour patients. Together, these studies suggest that a QPL may be appropriate for the neuro-oncology setting and acceptable to patients. The QPL aims to assist patients to express their information needs, enabling health professionals to better provide the type and amount of information that patients need to prepare for treatment and the future. This may help health professionals meet the challenge of giving patients sufficient information, without providing ‘too much’ or ‘unnecessary’ information, or taking away hope. Future studies with rigorous designs are now needed to determine the effectiveness of the QPL.

Does the housing market respond to information disclosure? : Effects of toxicity indices in Japan

The policy instruments that provide information on a firm's or facility's environmental performance, such as the U.S. Toxic Release Inventory (TRI) and the Pollutant Release and Transfer Register system (PRTRs) used in some European countries and Japan, play an important role in encouraging firms or facilities to improve their environmental performance, if investors, consumers and residents recognize their environmental performance. This study uses a hedonic approach to explore how the Japanese rental housing market responds to carcinogenic risk arising from releases and transfers of chemical substances produced and used at close facilities. We found that residents do not perceive carcinogenic risk generated more than 1.0 km away from their residence and that they seem to recognize the increased carcinogenic risk at distances from 0.5 km to 1.0 km away; a 1% increase in carcinogenic risk reduces the average rent by 0.0007%. The distance at which residents perceive the risk arising from such facilities is less than in previous studies. This suggests that the risk perception recognized in previous studies may capture the other externalities in addition to the chemical risk because the risk is measured by the distance.

Australian Library and Information Association (ALIA)

The Australian Library and Information Association (ALIA) is the professional association for the Australian library and information services sector. It seeks to empower the profession in the development, promotion and delivery of quality library and information services to the nation, through leadership, advocacy, and mutual support. The ALIA represents the interest of 6000 members, the profession and Australia's 12 million library users. The objects of the Association are listed in its constitution. They are To promote the free flow of information and ideas in the interest of all Australians and a thriving culture, economy, and democracy. To promote and improve the services provided by all kinds of library and information agencies. To ensure the high standard of personnel engaged in information provision and foster their professional interests and aspirations. To represent the interests of members to governments, other organizations, and the community. To encourage people to contribute to the improvement of library and information services through support and membership of the association.

International sources of fisheries information to enhance fish production, poverty alleviation and food security in Nigeria and developing Nigerian Fisheries and Aquatic Sciences Database

The paper viewed the decline in information provision in Nigeria to poor library development, which could be attributed to poor funding. The consequence is that current journal and books are not available in nigerian fisheries libraries. Information which can be regarded as the first factor of production on which other factors like land, labour and capital depend, can only be provided at the right time when libraries are better founded. For now if there must be increase in fish production, poverty alleviation and food security in Nigeria, our fisheries scientists and policy makers will have to rely on international sources of information using the advantage of internet connectivity. Some of such sources discussed in this paper are ASFA, AGORA, FAO DOAJ, FISHBASE, IAMSLIC, INASP, INASP-PERI, INASP-AJOL, ODINAFRICA, SIFAR, WAS, and ABASFR. However, reliance on international sources must not be at the total neglect of harnessing nigerian fisheries information. For the Nigerian Fisheries and Aquatic Sciences Database being developed by NIFFR to attain an international status like those enumerated above, scientists and publishers are requested to take the pain of depositing copies of their publications with NIFFR for inclusion in the Database

Providing Legal Information and Advice to Older People: as much a question of accessibility as affordability

No continent has as high a proportion of older people as Europe. In this paper, we report the findings of an empirical project examining the legal advice needs of older people. An important element of the project also sought information about the capacity of the internet for meeting the legal advice needs of older people. Overall our findings broadly indicate considerable failings in legal information provision for older people from more traditional advice sources. Whilst we have uncovered some examples of individualised good practice, our research in the main revealed an alarming sense of fear, mistrust, uncertainty and ambivalence among older people towards accessing legal advice. The research was funded by the Changing Ageing Partnership (CAP). We believe our findings have broad implications and applicability across Europe.

Measuring non-use value of environmental goods using the contingent valuation method:problems of information and cognition and the application of cognitive questionnaire design methods

Much interest now focuses on the use of the contingent valuation method (CVM) to assess non-use value of environmental goods. The paper reviews recent literature and highlights particular problems of information provision and respondent knowledge, comprehension and cognition. These must be dealt with by economists in designing CVM surveys for eliciting non-use values. Cognitive questionnaire design methods are presented which invoke concepts from psychology and tools from cognitive survey design (focus groups and verbal reports) to reduce a complex environmnetal good into a meaningful commodity that can be valued by respondents in a contingent market. This process is illustrated with examples from the authors' own research valuing alternative afforestation programmes. -Authors

Patients' attitudes towards, and information needs in relation to, nurse prescribing in rheumatology

Aims and objectives: To assess the level of confidence that rheumatology patients would have in nurse prescribing, the effects on likely adherence and particular concerns that these patients have. In addition, given that information provision has been cited as a potential benefit of nurse prescribing, the present study assessed the extent to which these patients would want an explanation for the selected medicine, as well as which types of information should be included in such an explanation. Background: Nurse prescribing has been successfully implemented in the UK in several healthcare settings. Existing research has not addressed the effects on patients' confidence and likely adherence, nor have patients' information needs been established. However, we know that inadequate medicines information provision by health professionals is one of the largest causes of patient dissatisfaction. Methods: Fifty-four patients taking disease-modifying drugs for inflammatory joint disease attending a specialist rheumatology clinic self-completed a written questionnaire. Results: Patients indicated a relatively high level of confidence in nurse prescribing and stated that they would be very likely to take the selected medication. The level of concern was relatively low and the majority of concerns raised did not relate to the nurse's status. Strong support was expressed for the nurse providing an explanation for medicine choice. Conclusion: This research provides support for the prescription of medicines by nurses working in the area of rheumatology, the importance of nurses providing a full explanation about the selected medicines they prescribe for these patients and some indication as to which categories of information should be included. Relevance to clinical practice: Rheumatology patients who have not yet experienced nurse prescribing are, in general, positive about nurses adopting this role. It is important that nurses provide appropriate information about the prescribed medicines, in a form that can be understood.