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.

A decade ago, only 10% of U.S. healthcare organizations used an electronic health record (EHR), whereas more than 99% do today. The rapid adoption of EHRs has radically transformed communication of health information. Previously, health records consisted of providers handwriting notes in paper charts, rarely seen by outsiders. Today, EHRs integrate information from dozens of sources, to be used by providers, administrators, researchers, and increasingly, patients. Last year alone, an estimated 100 million Americans interacted with their own health records through patient-facing systems. This information has been used to prevent medical errors, reduce nonadherence to treatment, increase shared decision-making, and improve health outcomes. However, failure to comprehend this information can negate any potential benefits and even cause medically-harmful miscommunication. Therefore, it is critical to represent health information using methods that promote patients' comprehension. Despite the need for better representation, today's patient-facing systems do little more than present unexplained data, and limited guidance has been given by research or policy. In this thesis, we present new evidence about representation of health information in patient-facing systems, and we use this evidence to develop informatics methods that promote comprehension. Two aims center on (1) medical abbreviations and acronyms, one of the biggest barriers to patients' comprehension of their health records, and (2) changes in patient-reported outcomes, one of the most important informants of chronic disease management. We assess challenges with representing this information to patients, using randomized trials and qualitative studies. Then, we develop and evaluate an array of informatics methods for overcoming challenges, specifically: (1) machine learning methods for automated expansion of medical abbreviations and acronyms, and (2) information visualization methods for representing changes in patient-reported outcomes. In the future, these interventions can be implemented in patient-facing systems to optimize comprehension. Our evidence will guide strategies for meaningful communication that, ultimately, will build trust between patients and the healthcare system that serves them.

In a landmark report, the Secretary of Health and Human Services once characterized the legacy of disparities in healthcare and health outcomes in the United States as “an affront to our ideals and the ongoing genius of American medicine.” Since then, a vast amount of scientific evidence regarding health equity has been generated and important interventions developed. Yet despite substantial concerted efforts, health inequity remains a persistent and pervasive public health concern. A significant challenge is the lack of scalable resources to organize, synthesize, and integrate knowledge gleaned from available scientific evidence and real-world observational data in a comprehensive, systematic fashion. Recognizing this, the National Institute on Minority Health and Health Disparities recently embarked on a science visioning process and enumerated a set of strategic goals to foster a new generation of research capable of making major strides. Among the strategies proposed, the institute promotes development of new methods and measurements that enable 1) evaluation of health equity research and ensuring its relevance to a diversity of populations, 2) better leveraging and fostering linkage between existing and emerging data sources to enhance analytic capacity, and 3) analysis of health determinants contributing to health disparities among subpopulations and small groups. In alignment with this vision, the studies presented in this thesis seek to advance health equity science by developing, applying, and evaluating informatics-based approaches to support evidence synthesis, monitoring, and precision. In particular, systematic, scalable, and sustainable (i.e., reproducible) approaches are emphasized. This dissertation employs robust methods for big data collection, integration, and analysis while drawing from a rich set of existing and emerging data sources including a large corpus of biomedical literature, electronic health records from the largest public health information exchange in the United States, open datasets provided by public agencies, proprietary national insurance claims datasets, and public health reporting data. The dissertation first aims to facilitate large-scale evidence synthesis to identify major areas of focus in health equity research and elucidate potentially less well studied populations, conditions, and topics. In order to accomplish these tasks, it draws from the informatics toolbox by leveraging machine learning, natural language processing, and symbolic reasoning to assess a vast portfolio of research and compare it to real-world data on condition prevalence. In doing so, it spotlights potential paths for additional scientific inquiry and attention in public health practice. Ultimately, we find that there are indeed potential disparities in disparities research and elucidate less well studied areas of interest. Building on these insights, this thesis then leverages underutilized real-world data sources (e.g., health information exchanges) and a common data model to buttress the highly fragmented and outdated public health data infrastructure currently used to monitor conditions of interest and elucidate potential disparities among populations. By intention, the illustrative example presented operates at a scale commensurate with current regional public health reporting, increases the number and types of data elements available for analysis, and improves turnaround time for surveillance report generation. We found a substantial lack of alignment between testing practices and population- and neighborhood-level trends in cases of sexually transmitted infections, signaling potential disparities and inefficient resource allocation. Thus, our work meets several hallmarks of infectious disease surveillance in the era of big data including volume, variety, velocity, and value, respectively. Importantly, these findings were not otherwise or less likely detectable given existing public health reporting practices. Finally, as existing health equity literature and public health surveillance practices do not often incorporate intersectionality as an integral lens for drawing comparisons, in large part due to the technical intractability of examining all possible demographic intersections, we demonstrate a novel subgroup discovery approach tailored to elucidating intersectional disparities in health outcomes. In doing so, it aims to better inform efforts to recognize and engage subgroups who might benefit from greater attention and more closely tailored interventions. To our knowledge, this new approach is the first to leverage supervised clustering to operationalize intersectionality for health disparities research. To ground this work, clinical examples focus especially on demonstrating application of each new approach to generalizable use cases involving HIV and other sexually transmitted infections – highly stigmatized conditions for which there is a long history of inequity.

This study investigates, within the current health care situation, the interrelationship of the user, resources and tool in the design of a prototype WELLNESS database-driven web site. A shift has taken place in health care, in which the base of conventional medicine has broadened to integrate other systems, practices and worldviews. These include complementary and alternative medicine, health promotion, disease prevention and wellness. Emphasis is placed on the need to take personal responsibility for one's own health and wellness. The global burden of chronic disease, reaching epidemic proportions, is increasingly linked to risk factors resulting from personal lifestyle choices. The growing evidence of the user's need to make personal, informed, lifestyle choices and their reliance on the Web for health information, required investigation. WELLNESS, a specific orientation to health and wellness, formed the framework within which the user and resources were defined and the tool designed. The user was profiled as the WELLNESS health information seeker, hereby contributing significantly to an understanding of the user in this new context. The user profile informed the establishment of resource selection criteria and tool design. The identification of WELLNESS content selection criteria, within a five-dimensional model, was required to ensure quality, relevant and credible resources. The tool is comprised of the WELLNESS thesaurus and WELLNESS database-driven web site. The WELLNESS thesaurus was constructed based on a combination of relevant thesauri. It will be used as an indexing tool. An investigation of existing health information web sites highlighted the importance of designing a specific WELLNESS database-driven web site. A database host was identified against which the original study's conceptual schema was assessed. A low-fidelity prototype web site was designed as the interface between the WELLNESS health information seeker and the database of WELLNESS health information resources. This study has epidemiological, philosophical, epistemological, sociological and psychological relevance. The provision of access to WELLNESS health information resources, made available in the WELLNESS database-driven web site, for personal, informed lifestyle choice by the WELLNESS health information seeker could potentially contribute to the reduction of the global burden of chronic disease. / Information Science / D.Litt. et Phil. (Information Science)

This study investigates, within the current health care situation, the interrelationship of the user, resources and tool in the design of a prototype WELLNESS database-driven web site. A shift has taken place in health care, in which the base of conventional medicine has broadened to integrate other systems, practices and worldviews. These include complementary and alternative medicine, health promotion, disease prevention and wellness. Emphasis is placed on the need to take personal responsibility for one's own health and wellness. The global burden of chronic disease, reaching epidemic proportions, is increasingly linked to risk factors resulting from personal lifestyle choices. The growing evidence of the user's need to make personal, informed, lifestyle choices and their reliance on the Web for health information, required investigation. WELLNESS, a specific orientation to health and wellness, formed the framework within which the user and resources were defined and the tool designed. The user was profiled as the WELLNESS health information seeker, hereby contributing significantly to an understanding of the user in this new context. The user profile informed the establishment of resource selection criteria and tool design. The identification of WELLNESS content selection criteria, within a five-dimensional model, was required to ensure quality, relevant and credible resources. The tool is comprised of the WELLNESS thesaurus and WELLNESS database-driven web site. The WELLNESS thesaurus was constructed based on a combination of relevant thesauri. It will be used as an indexing tool. An investigation of existing health information web sites highlighted the importance of designing a specific WELLNESS database-driven web site. A database host was identified against which the original study's conceptual schema was assessed. A low-fidelity prototype web site was designed as the interface between the WELLNESS health information seeker and the database of WELLNESS health information resources. This study has epidemiological, philosophical, epistemological, sociological and psychological relevance. The provision of access to WELLNESS health information resources, made available in the WELLNESS database-driven web site, for personal, informed lifestyle choice by the WELLNESS health information seeker could potentially contribute to the reduction of the global burden of chronic disease. / Information Science / D.Litt. et Phil. (Information Science)