Electronic Health Records (EHRs) is a health information technology that has already begun to change the way healthcare providers care for patients. EHRs can potentially enhance the quality and efficiency of patient care (Simon et al., 2010); however, some research shows that EHRs do not always do so. The lack of improved efficiency and quality of care can lead to frustrated and dissatisfied users. The effects of different aspects of EHR implementation could affect user satisfaction and perceived quality of EHRs. This study investigates the how time since implementation, training, and leadership affect user satisfaction and perceived quality of the EHR system in clinics in Mississippi. The results of the study indicate that training and leadership have an effect on users’ perceived quality and satisfaction with EHRs. These findings reveal that clinics and EHR providers should focus on training and leadership to improve user satisfaction and perceived quality of EHRs.

Indiana University-Purdue University Indianapolis (IUPUI) / Due to frequent utilization, high costs, high prevalence, and negative health outcomes, the care of patients managing type 2 diabetes mellitus (T2DM) remains an important focus for providers, payers, and policymakers. The challenges of care delivery, including care fragmentation, reliance on patient self-management behaviors, adherence to care management plans, and frequent medical visits are well-documented in the literature. T2DM management produces numerous clinical data points in the electronic health record (EHR) including laboratory test values and self-reported behaviors. Recency or absence of these data may limit providers’ ability to make effective treatment decisions for care management. Increasingly, the context in which these data are being generated is changing. Specifically, telehealth usage is increasing. Adoption and use of telehealth for outpatient care is part of a broader trend to provide care at-a-distance, which was further accelerated by the COVID-19 pandemic. Despite unknown implications for patients managing T2DM, providers are increasingly using telehealth tools to complement traditional disease management programs and have adapted documentation practices for virtual care settings. Evidence suggests the quality of data documented during telehealth visits differs from that which is documented during traditional in-person visits. EHR data of differential quality could have cascading negative effects on patient healthcare outcomes. The purpose of this dissertation is to examine whether and to what extent levels of EHR data quality are associated with healthcare outcomes and if EHR data quality is improved by using health information technologies. This dissertation includes three studies: 1) a cross-sectional analysis that quantifies the extent to which EHR data are timely, complete, and uniform among patients managing T2DM with and without a history of telehealth use; 2) a panel analysis to examine associations between primary care laboratory test ages (timeliness) and subsequent inpatient hospitalizations and emergency department admissions; and 3) a panel analysis to examine associations between patient portal use and EHR data timeliness.

Indiana University-Purdue University Indianapolis (IUPUI) / The dissertation consists of three essays attempting to assess the impact of expanded health insurance policy on cancer care continuum and measure the unbiased program effects after taking care of mis-measured cancer screening self-reports. The first essay examines the impact of the Affordable Care Act’s Medicaid expansion on time to oral cancer treatment initiation since diagnosis, quality of hospital care such as length of stay in the hospital, planned and unplanned readmissions post-surgery, and care outcome such as ninety-day mortality since surgery. The study uses two-way fixed effects linear model analysis under a difference-in-difference estimation setting to show that Medicaid expansion eligibility reduced overall oral cancer treatment initiation timing since diagnosis, including radiation initiation as well as first surgery of the primary site. It also shortened the length of stay in the hospital post-surgery. The second essay assesses the value of electronic medical records from Indiana health information exchange (IHIE) and survey self-reports of Indiana residents seen at Indiana University Health in measuring population-based cancer screening for colorectal, cervical, and breast cancer. Between the two measures of screening, the study examines association using Spearman’s rank correlation and concordance using Percent Agreement and Gwet’s Agreement Coefficient. Health information exchange and self-reports, both provided unique information in measuring cancer screening, and the most robust measurement approach entails collecting screening information from both HIE and patient self-report. In this study, we find evidence of measurement error in self-reports in terms of reporting bias. The majority of the publicly available datasets collect information on cancer screening behavior through patient interviews which are self-reported and may suffer from potential measurement errors. The third essay uses a nationwide population-based database and examines the true, unbiased impact of Medicaid expansion on cancer screening for breast, colorectal, cervical, and prostate cancers after correcting for any bias due to possible misclassification of the self-reported screening status. This study conducts a modified two-way fixed effects probit model under a difference-in-difference estimation setting to identify and correct the errors in the self-reports and estimate the unbiased program effect which shows positive impact on cancer screening with increased effect sizes.

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Yes / Optimising the use of patient data has the potential to produce a transformational change in healthcare planning, treatment, condition prevention and understanding disease progression. Establishing how people's trust could be secured and a social licence to share data could be achieved is of paramount importance. The study took place across Yorkshire and the Humber, in the North of the England, using a sequential mixed methods approach comprising focus groups, surveys and co-design groups. Twelve focus groups explored people's response to how their health and social care data is, could, and should be used. A survey examined who should be able to see health and care records, acceptable uses of anonymous health and care records, and trust in different organisations. Case study cards addressed willingness for data to be used for different purposes. Co-creation workshops produced a set of guidelines for how data should be used. Focus group participants (n = 80) supported sharing health and care data for direct care and were surprised that this is not already happening. They discussed concerns about the currency and accuracy of their records and possible stigma associated with certain diagnoses, such as mental health conditions. They were less supportive of social care access to their records. They discussed three main concerns about their data being used for research or service planning: being identified; security limitations; and the potential rationing of care on the basis of information in their record such as their lifestyle choices. Survey respondents (n = 1031) agreed that their GP (98 %) and hospital doctors and nurses (93 %) should be able to see their health and care records. There was more limited support for pharmacists (37 %), care staff (36 %), social workers (24 %) and researchers (24 %). Respondents thought their health and social care records should be used to help plan services (88 %), to help people stay healthy (67 %), to help find cures for diseases (67 %), for research for the public good (58 %), but only 16 % for commercial research. Co-creation groups developed a set of principles for a social licence for data sharing based around good governance, effective processes, the type of organisation, and the ability to opt in and out. People support their data being shared for a range of purposes and co-designed a set of principles that would secure their trust and consent to data sharing. / This work was supported by Humber Teaching NHS Foundation Trust and the National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC).

Despite rapid advances in technology, there is currently a complex, and somewhat disjointed approach to the way health information is collected, stored, and organized for both healthcare consumers and professionals. Incompatible electronic medical records from various healthcare providers add to the complexity of a system tasked with delivering a patient’s relevant medical information in a timely manner to the appropriate point of care. Personal health records (PHR) grew out of the efforts to produce an integrated electronic record to manage the multifaceted aspects of healthcare required by both healthcare consumers and professionals. PHRs are a transformative technology with the potential to alter patient-provider relationships in a way that produces a more efficient and cost effective healthcare system as a result of better patient outcomes. PHRs can potentially include a wide variety of users ranging from the lay public to clinical professionals. As such, it is important to identify potential user groups and their corresponding health information needs in order to design PHRs that maximize accessibility, usability, and clinical relevance. This study focused on laypeople who represented a wide age-range of individuals, evenly split in gender, with an above average level of computer literacy. Most of the participants had not used an electronic PHR prior to this study. However, after a hands-on session with PHR software, most participants found it to be easy to use, accompanied with the functionality they expected from such a system. Most participants were satisfied that an electronic PHR would meet their health information needs and would recommend the use of PHRs to family and friends. Anyone in the general public is a potential PHR user. However, this study found that individuals with chronic conditions and those with complex health needs had the most to gain from using a PHR as an integral part of their healthcare routine. This study also demonstrated that an individual’s health condition has a stronger influence on their perceptions about the usefulness of PHRs than does their demographic background (age, education, computer literacy). Finally, this study established that PHRs are considered by participants of the study to be useful tools in meeting their health information needs. / Graduate / 0723 / 0769 / 0984 / dguarin@uvic.ca

Ein zentrales Thema der medizinischen Informatik ist der institutionsübergreifende Austausch von Patientendaten zwischen den Akteuren des Gesundheitswesens. Die Notwendigkeit einer einheitlichen nationalen Telematikinfrastruktur für einen institutions-übergreifenden Austausch wurde auch von der Politik anerkannt. Dementsprechend wurde 2003 mit dem Gesetz zur Modernisierung der gesetzlichen Krankenversicherung (GMG) der erste Grundstein gelegt. Eine der Anwendungen, die laut Gesetzgebung (§ 291a SGB V) über die Telematikinfrastruktur umgesetzt werden sollte, ist die sogenannte elektronische Patientenakte. Diese Anwendung sollte es dem Patienten ermöglichen, seine Versorgungsdaten in einer eigenen Dokumentation zu führen und mit den Systemen seiner Behandler elektronisch zu kommunizieren. Bei der Gesetzgebung wurde der Fokus sehr eng gefasst, um aus Datenschutzgründen eine enge Zweckbindung der elektronischen Patientenakte sicher zu stellen. Wichtige Themen wie die Partizipation der Bürger und Patienten an der medizinischen Forschung wurden ausgeklammert. Werden die Prozesse der elektronischen Datenerfassung in der Versorgung und in der medizinisch-klinischen Forschung (z. B. den Universitätskliniken) betrachtet, so fällt auf, dass relevante Daten für die Versorgung und die Forschung häufig identisch sind. Da die Systeme von Forschung und Versorgung aber getrennt voneinander betrieben werden, kommt es zu Doppelerfassungen. Diese Doppelerfassungen sind für einen Anwender, der Daten in beide Systeme eintragen muss, schwer nachvollziehbar - auch die gewünschte Partizipation der Patienten an Forschungsvorhaben ist so kaum möglich. Die grundlegende Idee dieser Arbeit ist es, eine Schnittstelle zwischen einer elektronischen Patientenakte und der medizinischen Forschung gemäß den Vorgaben der nationalen Telematikinfrastruktur zu konzipieren. Damit soll dem oben geschilderten Problem der Doppelerfassung von Patientendaten entgegengewirkt werden, indem mit Hilfe dieser Schnittstelle ein Austausch von Patientendaten über eine elektronische Patientenakte zwischen den Systemen der Versorgung und Forschung ermöglicht wird. Zu diesem Zweck wurden zunächst die Systeme der Versorgung und der Forschung analysiert und ein Kommunikationsmodell sowie Datenschutzanforderungen für die Kommunikation zwischen einer elektronischen Patientenakte und den Systemen der Forschung formuliert. Auf Grundlage des Kommunikationsmodells und der Datenschutzanforderungen wurden sowohl eine Fach- als auch eine Sicherheitsarchitektur für die Schnittstelle zwischen einer elektronischen Patientenakte und den Systemen der Forschung beschrieben. Als Ergebnis konnte herausgestellt werden, dass die Anbindung der IT-Systeme der medizinischen Forschung über eine elektronische Patientenakte sicher und datenschutzkonform umgesetzt werden kann. Abschließend wird der entstandene Ansatz mit bisherigen Lösungen zur Nutzung von Versorgungsdaten für die medizinische Forschung kritisch verglichen und die Stärken einer in der nationalen Telematikinfrastruktur integrierte Löschung gegenüber alleinstehenden Insellösungen hervorgehoben. Es wird herausgestellt, dass die grundlegenden Konzepte stehen, aber noch erheblicher Aufwand erbracht werden muss, um ein auf nationaler Ebene verfügbares System bereitzustellen. Vorschläge für die weiteren Arbeiten zu einem funktionierenden System sowie weitere Potentiale der Ergebnisse dieser Arbeit werden in einem Ausblick aufgezeigt.

Os Sistemas de Registro Eletrônico em Saúde (S-RES) permitem manipular e analisar um grande volume de dados e informações de saúde. O desenvolvimento, disponibilização e uso de funcionalidades para S-RES pode beneficiar tanto os profissionais de saúde como os pacientes. Estes sistemas devem ser próprios para o contexto onde serão utilizados, podendo estar voltados a diferentes áreas da saúde, assim como para diferentes níveis de atenção à saúde. Para o usuário final, a adequação do S-RES é avaliada pela qualidade em uso que resulta, principalmente, da funcionalidade, confiabilidade, usabilidade e eficiência do sistema. O termo funcionalidade designa o aspecto do sistema computacional que retrata as funções necessárias para a resolução de problemas dentro de um determinado contexto de uso. A funcionalidade se refere àquilo que um programa faz e, no caso de software interativo, o que ele deve oferecer para seus usuários. Frente a este contexto, a presente dissertação se propõe a identificar, através da literatura e de documentos de referência sobre o tema, as funcionalidades para os S-RES com potencial de apoiar os profissionais de saúde na prestação do cuidado ao paciente na Atenção Primária à Saúde (APS). Nenhuma das listas de funcionalidades existentes na literatura é específica para S-RES para APS. Foi realizada uma revisão da literatura nas principais bases de dados da área da saúde. Para a extração das funcionalidades, foram selecionados os documentos mais relevantes e que eram referência para os demais materiais consultados. As funcionalidades apresentadas pelos documentos foram compiladas e formatadas em uma planilha eletrônica de maneira que pudessem ser utilizadas para seleção de funcionalidades para um S-RES para APS. As funcionalidades identificadas foram categorizadas e agrupadas por similaridade de aplicação em sete categorias relacionadas ao contexto de trabalho na APS. Três documentos foram utilizados para a seleção das funcionalidades. A análise das funcionalidades identificadas evidenciou a predominância de funcionalidades relacionadas a aspectos clínicos da prestação do cuidado dos pacientes. De um total de 145 funcionalidades, 91 (62,8%) foram classificadas como de “manejo clínico do paciente”, grande parte dessas voltadas para o diagnóstico e tratamento clínico, como também para o apoio à decisão clínica. O conjunto de funcionalidades relacionadas à “prevenção” e às classificadas como de “educação em saúde e comunicação com o paciente” representaram juntas apenas 20% do total, com respectivamente 11,7% e 8,3% do total de funcionalidades identificadas. Importantes funcionalidades para S-RES de APS que consideram as perspectivas e preferências do paciente e de sua família em relação à saúde, e ainda, o relacionamentos entre os sujeitos, foram classificadas como “aspectos subjetivos e familiares” e representaram 4,8% do total de funcionalidades de APS. Por fim, é possível reconhecer que a maioria das funcionalidades para S-RES adequadas ao contexto da APS está direcionada ao manejo clínico dos pacientes. São poucas as funcionalidades que contemplam as demais dimensões do trabalho em APS e que favorecem uma compreensão da pessoa de modo integral. / Electronic Health Records (EHR) systems allow to manipulate and analyze large volumes of data and health information. The development , availability and use of features for EHR systems can benefit both health professionals and patients. These systems shall be suitable to the context where they will be used, or can be directed to different areas of health, as well as different levels of health care. For the end user, the adequacy of the EHR systems is evaluated for quality in use which results mainly from the: functionality, reliability, usability and system efficiency. Functionality refers to the aspect of the computer system that represents the functions required to solve problems within a specified context of use. Functionality refers to what a program does and, in the case of interactive software, what it must offer to its users. Facing this context, this thesis aims to identify, through literature and reference documents on the subject, the functionality for the EHR systems with the potential to support health professionals in the provision of patient care in Primary health Care (PHC). None of functionalities lists existing in the literature is specific to EHR systems for PHC. A literature review was conducted in the main bases of health care data. For the extraction of functionalities, the most relevant documents were selected and they were reference for other found materials. The functionalities presented by the documents were compiled and formatted in a electronic spreadsheet. So it could be used for selection of functionalities for an EHR systems for PHC. The identified functionalities were categorized and grouped by similarity application in seven categories related to the work context in PHC. Three documents were used for selection of functionalities. The analysis of the identified functionalities showed the predominance of functionalities related to clinical aspects of the provision of patient care. The total of 145 functionalities, 91 (62.8%) were classified as "clinical management of patients", most of these focused on the diagnosis and treatment, but also to clinical decision support. The group of functionalities related to "prevention" and classified as "health education and communication with the patient" together accounted for only 20% of the total, respectively 11.7% and 8.3% of the identified functionalities. Important functionalities to EHR systems for Primary Healh Care which regard the perspectives and preferences of patients and their families in relation to health, and also the relationships between the subjects were classified as "subjective and family aspects" and represented 4.8% of total PHC functionalities. Finally, it is possible to recognize that most of the appropriate EHR systems functionalities to the context of Primary Health Care is directed to the clinical management of patients. There are few functionalities that contemplate other dimensions of Primary Health Care work and support a comprehension of the person as a whole.