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.

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)