This system is concerned with the design and implementation of a community health information system which fulfils some of the local needs of fourteen nursing and para-medical professions in a district health authority, whilst satisfying the statutory requirements of the NHS Korner steering group for those professions. A national survey of community health computer applications, documented in the form of an applications register, shows the need for such a system. A series of general requirements for an informations systems design methodology are identified, together with specific requirements for this problem situation. A number of existing methodologies are reviewed, but none of these were appropriate for this application. Some existing approaches, tools and techniques are used to define a more suitable methodology. It is unreasonable to rely on one single general methodology for all types of application development. There is a need for pragmatism, adaptation and flexibility. In this research, participation in the development stages by those who will eventually use the system was thought desirable. This was achieved by forming a representative design group. Results would seem to show a highly favourable response from users to this participation which contributed to the overall success of the system implemented. A prototype was developed for the chiropody and school nursing staff groups of Darlington health authority, and evaluations show that a significant number of the problems and objectives of those groups have been successfully addressed; the value of community health information has been increased; and information has been successfully fed back to staff and better utilised.

Medication nonadherence and lack of transition readiness are global challenges for individuals living with epilepsy and their families. Medication adherence measures the level of compliance with healthcare providers' treatment recommendations. Transition readiness is the gradual steps patients take to develop independence and self-management as they transfer from pediatric to adult healthcare models. Factors impacting medication adherence and transition readiness skills include developmental stage/age; forgetfulness; family/caregivers; socioeconomic status; knowledge/attitude about the disease; side effects; number of medications; and subjective and objective quantifications of adherence. One promising intervention for patients and families is mobile technology used for reaching, teaching, and communicating. However, no study has tested how mobile applications (m-apps) effect both medication adherence and transition readiness. This four-week study's primary aim was to test Medilepsy's (an m-app) effect on medication adherence in adolescents and young adults with epilepsy (AYA), ages 16-24, with and without caregiver support. Secondary aims were to examine Medilepsy's effect on transition readiness skills and evaluate usability, ease of use, and satisfaction. A one-group, quasi-experimental pre-post study design was used. A repeated measures test analyzed changes in medication adherence at five times. A Wilcoxon test analyzed mean pre-post transition readiness scores. There was no significant improvement in medication adherence mean scores. Significant improvement was demonstrated in self-reported pre-post transition readiness mean scores, with greatest improvement in two domains: Appointment Keeping by 13.75% and Managing Medications by 11.25%. The highest usability mean scores were 6.09 of 7 in ease of use, interface, and satisfaction. Participants scored Medilepsy 82.3% of 100%. This study contributes to chronic disease self-management science illustrating how Medilepsy reaches and engages AYA and caregivers. Future studies will expand the Medilepsy platform and include different research designs, longer study durations, younger and more diverse participants.

The countries within the Caribbean region are pursuing the development of national integrated health information systems (iHIS). The model of the Belize Health Information System (BHIS) is referenced as the implementation guide. There are no established standards to facilitate independent evaluation of these types of systems. This study utilizes existing knowledge to determine the common approaches for evaluating health information systems (HIS) and applies these findings to formulate an evaluation approach for these regional systems. This approach is intended to strengthen the regional capacity for evaluating national iHISs by examining the contextual factors and providing an evaluation tool, CHEATS+, for systems lifecycle evaluation.

The NHS is providing patients with access to summaries of their individual health records, so that they can understand and manage their conditions more effectively. At the same time, the government is encouraging patients to be more involved in the decisions made about their direction of care, as evidence shows that outcomes improve if decision-making is shared. As the Internet grows, people are using it as a major source of health information. However, anybody can post information to the Internet, and there is no guarantee that it is reliable, accurate, based on research, or relevant. Therefore, people searching online for health information, using generic search engines, are at risk of finding information that may have a detrimental effect on their health and wellbeing. The aim of this research is to produce a model of a multi-approach evidence-based, post-diagnosis support system for patients and carers in England. The literature review carried out by the author identified 300 papers which looked at both the importance of patient participation in decision-making, and the issues with finding and using health information for patients and carers, but not together in the same research. While much has been written about evidence based practice for health professionals, there is a gap in the research about evidence-based patient choice and information service provision and skills for the general public. This is an issue for health professionals because patients are being actively encouraged to participate in the choices made about their treatment, but while there is evidence demonstrating the effectiveness of patient participation, there is no evidence to say that they have adequate access to information and the skills to use it. Health services need to know if there is appropriate information support for the general public, otherwise there is a risk that patients will not have the right information to help them make the best choice. To assess the information-seeking behaviour of the general public, a mixed-study analysis was performed using quantitative and qualitative surveys, and 139 responses were collected and analysed. The population included people suffering from Alzheimer’s disease and their carers. The evidence and the survey results confirmed that people do want to make decisions with their doctor, and that they do search for information, but do not always find what they are looking for. They said that they would value librarian support and information skills training, but would also find an all-encompassing consumer health information web-site useful. A consumer health information literacy framework was developed based on the existing SCONUL Seven Pillars of Information Literacy framework and the five steps to evidence based practice concept. This framework provided the foundation for the design and development of COCO, an innovative model to facilitate access to high quality consumer health information using existing NHS online information products combined with the information skills of public and medical librarians. The innovations of COCO are that it focuses on the whole population, supports those who are and are not computer literate, creates an opportunity for collaboration within the library sector, and builds on existing NHS online resources rather than creating new ones. COCO provides people with a central access point to reliable and relevant online consumer health information to help them make informed decisions about their care pathway. The collaborative element of the model ensures that is accessible to everyone, without incurring significant costs to public services. The main output from this research synthesis, is an original needs-based model (COCO), designed to simplify the consumer health information-seeking process for the general public, enabling them to access the right information to fulfil their information needs and help them make evidence-based treatment decisions with their doctors. The design of COCO was reviewed, validated and improved using structured opinions of experts in consumer health information, evidence based practice, information literacy, and information technology. Real-life consumer scenarios were used to manually test COCO against free text searches in Google. The search results from COCO and Google were analysed and compared using six validation metrics. This demonstrated the efficiency of COCO in providing significantly better quality information relevant to patients and carers, compared to Google. A mock-up of the final design and search results of COCO were then prepared, along with recommendations for future research.

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Healthcare organizations (HCOs) currently have many information records about their patients. Yet, they cannot make proper, faster, and more thoughtful conclusions in many cases with their information. Much of the information is structured data such as medical records, historical data, and non-clinical information. This data is stored in a central repository called the Data Warehouse (DW). DW provides querying and reporting to different groups within the healthcare organization to support their future strategic initiatives. The generated reports create metrics to measure the organization's performance for post-action plans, not for real-time decisions. Additionally, healthcare organizations seek to benefit from the semi-structured and unstructured data by adopting emerging technology such as big data to aggregate all collected data from different sources obtained from Electronic Medical Record (EMR), scheduling, registration, billing systems, and wearable devices into one volume for better data analytic. For data completeness, big data is an essential element to improve healthcare systems. It is expected to revamp the outlook of the healthcare industry by reducing costs and improving quality. In this research, a framework is developed to utilize big data that interconnects all aspects of healthcare for real-time analytics and performance measurements. It is a comprehensive framework that integrates 41 integrated components in 6 layers: Organization, People, Process, Data, Technology, and Outcomes to ensure successful implementation. Each component in the framework and its linkage with other components are explained to show the coherency. Moreover, the research highlights how data completeness leads to better healthcare quality outcomes, and it is essential for healthcare organization survival. Additionally, the framework offers guidelines for selecting the appropriate technology with the flexibility of implementing the solution on a small or large scale, considering the benefits vs. investment. A case study has been used to validate the framework, and interviews with Subject Matter Experts (SMEs) have been conducted to provide another valuable perspective for a complete picture. The findings revealed that focusing only on big data technology could cause failing implementation without accomplishing the desired value of the data analytics outcomes. It is only applied for one-dimensional, not at the enterprise level. In addition, the framework proposes another 40 components that need to be considered for a successful implementation. Healthcare organizations can design the future of healthcare utilizing big data and analytics toward the fourth revolution in healthcare known as Healthcare 4.0 (H 4.0). This research is a contribution to this effort and a response to the needs.

Abstract INFORMATION NEEDS AND INFORMATION SOURCES OF PATIENTS DIAGNOSED WITH RARE CANCERS By Dana L. Ladd, Ph.D., MS, SLIS BACKGROUND: Approximately 25% of all cancers diagnosed are considered rare. Patients may face many significant challenges including difficulty obtaining information about their rare conditions. Patients often have high information needs and may seek desired information from a variety of informational sources including healthcare providers, media, print, government and non-profit organizations in order to meet their needs. Accessing reliable consumer-level information can be challenging and often information needs are unmet. Dissatisfaction with health information provision can result in negative health-related outcomes and factors including decreased health-related quality of life. METHOD: This cross-sectional design study used validated measures to assess the information needs, information sources, information satisfaction, and health-related quality of life of patients diagnosed with rare cancers (n=113). Adult patients at the VCU Health Massey Cancer Center who had been diagnosed with a rare cancer in the past 12 months were contacted via mail survey. Descriptive statistics were used to summarize patients’ information need and information received levels. Unmet needs were analyzed using a two-sample T-test. Chi-square tests were used to analyze information needs and received by demographics for gender and race and logistic regression analysis was used for age. Descriptive statistics summarized information sources used and preferred. Finally, descriptive statistics were used to summarize information satisfaction. The relationship between information satisfaction and health-related quality of life was assessed using a two-sample T-test. RESULTS: Study participants had high information needs, particularly for information about disease, medical tests, and treatment. Though patients also reported receiving information at high levels, 21 participants (18.9%) reported being unsatisfied with information provision. Unmet needs were found for information about disease and on the item level for information about causes of cancer, whether their cancer was under control, expected benefits of treatment, and financial, insurance, and work-related information. Although participants reported preferring information from their healthcare providers, they most commonly sought information from the Internet more than any other source. CONCLUSION: By identifying patients’ information needs and sources, this study fills an important gap in the information needs and sources literature of patients diagnosed with rare cancers. Identification of these needs allows healthcare providers to tailor information provision to more effectively meet patients’ information needs.

This thesis research contributes to national health Information Management/Information Technology (IM/IT) planning and therefore strategy development and implementation research, as well as to health information science. An examination into the national health IM/IT plans of several countries provides knowledge into identifying the typical IM/IT priorities that selected countries are focusing upon for healthcare improvement. Second, a systematic literature review of the current challenges, barriers and/or issues (referred to as ‘challenges’ hereafter) facing IM/IT priority implementation in healthcare settings provides insight on where nations should perhaps be focusing their attention, in order to enable more successful healthcare IM/IT implementations. Lastly, a study on national health IM/IT priorities contributes to the body of evidence that national level IM/IT direction is necessary for better patient care and health system reform across the world. In this investigation, the national health IM/IT priorities, which are reflected in the national health IM/IT strategic plans of five countries were assessed. To this end, the study: 1) Developed a set of measures to select four countries to study in addition to Canada; 2) Described the national health IM/IT priorities of Canada and four other countries; 3) Performed a systematic literature review of the challenges to overcome for successful implementation of IM/IT into healthcare settings; 4) Developed and administered a questionnaire where participants were asked to give their opinions on the progress their country has achieved in dealing with such challenges; and 5) Performed an analysis of the questionnaire results with respect to the countries’ national health IM/IT priorities. The systematic literature review uncovered a large number of challenges that the health informatics and healthcare community face when attempting to implement IM/IT into healthcare settings. iii The priority comparison highlighted that there is no right or wrong answer for what countries should focus their national health IM/IT energies upon. The findings indicate that nations focus their resources (time, money, personnel etc.) on the priorities they feel they should, whether those stem from needs analyses or politics. However, by learning about what other nations are prioritizing, a country can use that knowledge to help focus their own national health IM/IT priorities. The questionnaire results drew attention to the most frequently encountered challenges the five countries face in moving their national health IM/IT agendas forward. The feedback from the respondents provided individual reflections on how IM/IT implementations are actually progressing in their country, where problems are being encountered, including the nature of those problems, and in some cases, respondents offered insight on how to better deal with the challenges they face. The findings indicate that nations encounter similar problems in implementing IM/IT into healthcare settings. Currently, the world is facing many of the same healthcare system issues: shortages of healthcare processionals, long surgical and diagnostic imaging waitlists, ‘skyrocketing’ pharmaceutical drug pricing, healthcare funding practices, and challenges with implementing healthcare IM/IT priorities to name a few. If countries are facing similar health system problems, then it would be logical to assume that solutions to deal with such problems would be similar across nations. Thus, it is recommended that international fora and conferences be held to further discuss the types of health system IM/IT priorities that countries are implementing at a nation scale, the kinds of challenges they face and the solutions or conclusions that they have formulated in response to these challenges.

In this study health information seeking behaviour among young adults is investigated and attitudes toward available health information examined. Further, the electronic health record(EHR), ‘Journalen’, is investigated among young adults that use the health services in Sweden. The aim of this study is to gain insight in young adults’ health information seeking behaviour on the Internet.   A survey of health information seeking behaviour among young adults, 18-29 years old, reports that as well as searching for information for their own use, searching for information to help family and friends is also their practice. 95.4% say that they search for health information on the Web.   Overall, the top five categories of information searched are Personal Health, Symptoms, Healthy Diet, Mental Health and Treatment. For the Top five Information searches for themselves(’Self’), Mental Health is displaced by Disease Prevention. Health information categories sought the least by the young adults are information about Illegal Drugs, Allied Health, Alternative medicine and Support Groups. Respondents mostly report a high regard for the information they retrieve in their searches.   The majority rate the quality of health information as ‘Good’ or ‘Very Good’. Broadly speaking the young adults trust the health information found online but say that the quality of health information varies from source to source. 1177.se is often referred to as a trustworthy source among the respondents and according to them good quality information can be found there. The respondents use of support groups for themselves is reported, as well an altruistic motivation to support others. While the motivation for many searches is to avoid attending a health professional, approximately one-third report searching after their visit.   This study demonstrates that young adults are active consumers of health information on the Internet and their attitudes toward the available health information are generally positive. Of the respondents who are Swedish residents, 42% are unaware of the availability of their electronic health record in Sweden, Journalen, and of those 56.7% who know of it, 18% have never accessed their EHRs.  More research is needed to investigate the reason for the relatively low numbers of the young adults’ awareness and use of the Journelen. The aim of the study is discussed in the Introduction chapter and research questions identified. The research design is described in the methodology chapter and how data is collected through a survey. Results are presented in Tables and Figures and further analysed in the Analysis chapter in context of earlier research. Finally, the researcher concludes on the study and what could be learned from the findings.

More and more parents are turning to the Internet for information about their children’s health and wellbeing. With all of the conflicting information online, how do parents decide which health websites to believe and follow? One website element the impact of which is not well understood is the readability level of content presented. An online survey was conducted with parents and university students in an attempt to isolate the relationships between website readability and credibility judgements and intentions to act. Parents and students were randomly assigned to view and evaluate one of three mock websites about Fragile X syndrome with identical content but differing readability levels. It was predicted that users would find websites that were easier to understand more credible and they would in turn then be more likely to act on the information from simple readability websites. Contrary to the author’s hypothesis, students were more likely to follow recommendations on websites written at a complex readability level, when they were engaged with the website. Results also showed that readability was less of an influence on credibility than were the parents’ pre-experiment knowledge of the disorder. / February 2017