There is a growing demand to involve patients in their own healthcare. Personal Health Records are among the most promising tools for this purpose. However, these tools need to meet patients’ needs and interests in order to be fully adopted and successfully used. This study takes a user centered design approach to design and develop a personal health record for prostate cancer patients by involving them in two main activities of a user centered design: requirements gathering and evaluation. The first phase of the study uses content analysis to analyze interviews with patients and elicit their needs and concerns. Results of this phase showed that patient’s information needs are different depending on the stage of the disease. Before starting treatment, patients are more interested in information about different methods of treatment and their potential side effects. However, after treatment, patients mostly need information about the management of treatment complications and the long term follow ups of their disease. Results also showed that the Internet is the most common information source for patients to find information. However, patients expressed concerns regarding the credibility and reliability of information they found on the Internet. The majority of patients also showed interest in accessing their medical records. However, some patients were concerned about the understandability of the information. Also, there was some concern regarding electronic access to medical records and security of personal data. The findings from phase one are used in phase two to modify a preliminary prototype of the system. In phase three, the modified prototype is evaluated by undergoing usability testing. Overall, the results of usability testing showed that the system was generally useful and easy to use. However, a number of issues were identified that could be resolved in the next iteration of its design and development. / Graduate / 0984

Indiana University-Purdue University Indianapolis (IUPUI) / Patients and providers need to exchange medical records. Electronic Health Records and Health Information Exchanges leave a patient’s health record fragmented and controlled by the provider. This thesis proposes a Peer-to-Peer Personal Health Record network that can be extended with third-party services. This design enables patient control of health records and the tracing of exchanges. Additionally, as a demonstration of the functionality of a potential third-party, a Hypertension Predictor is developed using MEPS data and deployed as a service in the proposed framework.

Personal Health Records (PHRs) allow patients to access and in some cases manage their own health records. Their potential benefits include access to health information, enhanced asynchronous communication between patients and clinicians, and convenience of online appointment scheduling and prescription refills. Potential barriers to PHR use include lack of computer and internet access, poor computer or health literacy, security concerns, and provider disengagement. PHRs may help those living in rural areas and those with chronic conditions such as heart failure, monitor and manage their disease, communicate with their health care team and adhere to clinical recommendations. To provide some much needed actual research, a descriptive mixed methods study of the usability, usefulness, and disease management potential of PHRs for rural heart failure patients was conducted. Fifteen participants were enrolled. Usability issues fell into three categories: screen layout; applying consistent, standard formatting; and providing concise, clear instructions. Participants used PHR features that were more convenient than other methods or that had some additional benefit to them. There was no difference between rural and urban participants. A heart failure nurse promoted recording daily heart failure symptoms in the PHR. Most participants did so at least once, but many found it cumbersome. Reasons for recording included the comfort of having clinical staff monitor the data. Participants who were stable did not find recording as useful as did those who were newly diagnosed or unstable. Participants used asynchronous communication to send messages to the heart failure nurse that they would not otherwise have communicated. The study expands the knowledge of PHR use by addressing useful functionality and disease management tools among rural patients with heart failure. The patients were able to complete tasks they found useful. The increased communication and disease management tools were useful to some.

As individuals are increasingly benefiting from the use of online services, there are growing concerns about the treatment of personal information. Society’s ongoing response to these concerns often gives rise to privacy policies expressed in legislation and regulation. These policies are written in natural language (or legalese) as privacy agreements that users must agree to, or presented as a set of privacy settings and options that users must opt in or out of in order to receive the service they want. But comprehensibility of privacy policies and settings is becoming increasingly challenging as agreements become longer and there are many privacy options to choose from. Additionally, organizations face the challenge of assuring compliance with policies that govern collecting, using, and sharing of personal data. This thesis proposes frameworks for personalized privacy and privacy auditing to address these two problems. In this thesis, we focus our investigation on the comprehensibility issues of personalized privacy using the concrete application domain of personal health data as recorded in systems known as personal health records (PHR). We develop the Privacy Goals and Settings Mediator (PGSM) model, which is based on i* multi-agent modelling techniques, as a way to help users comprehend privacy settings when employing multiple services over a web platform. Additionally, the PGSM model helps privacy experts contribute their privacy knowledge to the users’ privacy decision-making task. To address the privacy auditing problem, we propose two light-weight ontologies, L2TAP and SCIP, that are designed for deployment as Linked Data, an emerging standard for representing and publishing web data. L2TAP (Linked Data Log to Transparency, Accountability and Privacy) provides flexible and extensible provenance-enabled logging of privacy events. SCIP (Simple Contextual Integrity Privacy) provides a simple target for mapping the key concepts of Contextual Integrity and enables SPARQL query-based solutions for two important privacy processes: compliance checking and obligation derivation. This thesis validates the premise of PHR users’ privacy concerns, attitudes and behaviour through an empirical study. The usefulness of the PGSM model for privacy experts is evaluated through interviews with experts. Finally, the scalability and practical benefits of L2TAP+SCIP for log-based privacy auditing are validated experimentally.

As individuals are increasingly benefiting from the use of online services, there are growing concerns about the treatment of personal information. Society’s ongoing response to these concerns often gives rise to privacy policies expressed in legislation and regulation. These policies are written in natural language (or legalese) as privacy agreements that users must agree to, or presented as a set of privacy settings and options that users must opt in or out of in order to receive the service they want. But comprehensibility of privacy policies and settings is becoming increasingly challenging as agreements become longer and there are many privacy options to choose from. Additionally, organizations face the challenge of assuring compliance with policies that govern collecting, using, and sharing of personal data. This thesis proposes frameworks for personalized privacy and privacy auditing to address these two problems. In this thesis, we focus our investigation on the comprehensibility issues of personalized privacy using the concrete application domain of personal health data as recorded in systems known as personal health records (PHR). We develop the Privacy Goals and Settings Mediator (PGSM) model, which is based on i* multi-agent modelling techniques, as a way to help users comprehend privacy settings when employing multiple services over a web platform. Additionally, the PGSM model helps privacy experts contribute their privacy knowledge to the users’ privacy decision-making task. To address the privacy auditing problem, we propose two light-weight ontologies, L2TAP and SCIP, that are designed for deployment as Linked Data, an emerging standard for representing and publishing web data. L2TAP (Linked Data Log to Transparency, Accountability and Privacy) provides flexible and extensible provenance-enabled logging of privacy events. SCIP (Simple Contextual Integrity Privacy) provides a simple target for mapping the key concepts of Contextual Integrity and enables SPARQL query-based solutions for two important privacy processes: compliance checking and obligation derivation. This thesis validates the premise of PHR users’ privacy concerns, attitudes and behaviour through an empirical study. The usefulness of the PGSM model for privacy experts is evaluated through interviews with experts. Finally, the scalability and practical benefits of L2TAP+SCIP for log-based privacy auditing are validated experimentally.

Det här examensarbetet undersöker det personliga kontot för hälsoinformation (PHR) som alla medborgare i Sverige ska erbjudas. Detta efter ett beslut från Socialdeparte-mentet att genomföra en upphandling genom Apotekens Service AB. Upphandlingen är vid tiden för denna rapports färdigställande ännu inte genomförd vilket den var planerad att vara.Målet med examensarbetet är att på uppdrag av Mawell undersöka vilka affärsmöjlig-heter lanseringen av en nationellt tillhandahållen tjänst för PHR, och det ekosystem för applikationer och tjänster, förväntas leda till. Men också implementera två tjänster som visar konceptet med hur en tjänst kan användas för att skapa nytta för en utvald målgrupp.Under arbetet genomfördes litteraturstudier samt intervjuer med olika målgrupper. Syftet med intervjuerna var att identifiera vilka problem och behov dessa har i sina verksam-heter för att sedan analysera samt ge förslag på hur tjänster utvecklade för PHR kan utformas för att lösa dessa.Resultatet av undersökningen är ett antal olika tjänsteförslag baserade på målgruppernas problem och behov samt två tjänsteimplementationer. Rapporten ger även Mawell förslag på en tänkbar fortsättning på arbetet. / This thesis investigates the personal account for health information (PHR) that every citizen in Sweden will be offered. The Ministry of Health and Social Affairs has made a decision to conduct a public procurement through Apotekens Service AB. The pro-curement was not finalized at the time of this report.The goal of this thesis is to on behalf of Mawell investigate what business opportunities the launching of a nationally provided service for PHR, and the ecosystem for applica-tions and services, is expected to result in, but also to implement two services to demonstrate the concept of how a service could be used to create benefits for a selected target group.During the thesis work a literature study and interviews with different target groups were performed. The purpose with the interviews was to identify different problems that the target group have in their operations and then analyze and give a proposal to how services developed for PHR could solve the problems.The result of the investigation is proposed services based on the different problems and needs of the targets groups and two service implementations. The report also gives Mawell proposal to how they could continue this work further.

Indiana University-Purdue University Indianapolis (IUPUI) / Acceptance of PHR by physicians is fundamental as they play important role towards the promotion of PHR adoption by providing the access to the data to be maintained in PHR and also, using the information within the PHR for decision making. Therefore it is important to measure physicians' perspective on usefulness of PHR, and also the value and trust they have in PHR usage. Review of previous researches identifies the lack of availability of a valid survey instrument that can be used to measure physicians' perception on all different aspects of PHR use and acceptance. Using the integrated literature review methodology and Unified Theory of Acceptance and Use of Technology (UTAUT) as a guiding framework, this study was aimed to identify the factors that can be used in the development of comprehensive evaluation instrument to understand physicians' acceptance of PHR. Total 15 articles were selected for literature review and using the content analysis method, 189 undifferentiated data units were extracted from those articles. These data units were then categorized into the four core constructs of UTAUT. ―Other categorization system was also created for the data units that could not be classified into one of the UTAUT core constructs. Among four core UTAUT constructs, Performance Expectancy is found to be the most influential factor in physicians' acceptance of PHR, followed by ―Other factors, Facilitating Condition and Social Influence. Effort expectancy was found to be the least influential. The identified specific factors within each domain can be used to develop a valid survey instrument to measure physicians' perception on PHR.

<p>Primary care multi-disciplinary teams were central to recent reform plans for Canadian primary care, in response to limited resources and increasing demands. Health Information Technology was also an integral part of those plans as supporting infrastructure for the modernization of healthcare services, facilitating coordination, collaboration and access to services. As provider-centric Health Information Technology matures, attention turns to the patient. The hallmark of patient-centered applications is the electronic Personal Health Record System (PHR). These systems have grown beyond simple repositories of personal health information, extending to a range of information collection, sharing, self-management and exchange functions.</p> <p>The implementation of PHRs in primary care multi-disciplinary teams involves many stakeholders including patients, physician, allied health professionals and support staff. There is significant literature on physician and patient perspectives on all PHR functions. However, little attention has been given to the other stakeholders: allied health professionals and support staff.</p> <p>In this study, we explored the views of Allied Health Professionals (AHPs) and support staff, working in a primary care clinic adopting a patient-centered, multi-disciplinary model called the Family Health Team (FHT) model. Participants provided their insight on benefits, concerns and recommendations regarding the implementation of MyOSCAR, a PHR, at their clinic. Qualitative data was collected through semi-structured one-on-one interviews that were analyzed to extract common themes and summarize participant views. Process diagrams were produced to highlight opportunities for improvement of current work processes through the integration of MyOSCAR functions.</p> <p>As more teams are created in primary care and they attempt to implement new technologies, it is important to get a complete picture of all stakeholder views. This is the first study that focuses on the views of AHPs and support staff, contributing to the literature on PHR implementations. Findings from this study can contribute to future PHR implementations by informing planning and implementation.</p> / Master of Science (MSc)

Yes / Background: A Personal Health Record (PHR) is an electronic record that individuals use to manage and share their health information, e.g. data from their medical records and data collected by apps. However, engagement with their record can be low if people do not find it beneficial to their health, wellbeing or interactions with health and other services. We have explored the beliefs potential users have about a PHR, how it could be made personally relevant, and barriers to its use. Methods: A qualitative design comprising eight focus groups, each with 6–8 participants. Groups included adults with long-term health conditions, young people, physically active adults, data experts, and members of the voluntary sector. Each group lasted 60–90 min, was audio recorded and transcribed verbatim. We analysed the data using thematic analysis to address the question “What are people’s beliefs about making a Personal Health Record have relevance and impact?” Results: We found four themes. Making it work for me is about how to encourage individuals to actively engage with their PHR. I control my information is about individuals deciding what to share and who to share it with. My concerns is about individuals’ concerns about information security and if and how their information will be acted upon. Potential impact shows the potential benefits of a PHR such as increasing self-efficacy, uptake of health-protective behaviours, and professionals taking a more holistic approach to providing care and facilitating behaviour change. Conclusions: Our research shows the functionality that a PHR requires in order for people to engage with it. Interactive functions and integration with lifestyle and health apps are particularly important. A PHR could increase the effectiveness of behaviour change apps by specifying evidence-based behaviour change techniques that apps should incorporate. A PHR has the potential to increase health-protective behaviours and facilitate a more person-driven health and social care system. It could support patients to take responsibility for self-managing their health and treatment regimens, as well as helping patients to play a more active role when care transfers across boundaries of responsibility. / Leeds Informatics Board

Submitted by Silvana Teresinha Dornelles Studzinski (sstudzinski) on 2016-12-21T15:44:57Z No. of bitstreams: 1 Rodrigo Silva Pereira_.pdf: 951778 bytes, checksum: 90c6af826318df7c8204565678dff935 (MD5) / Made available in DSpace on 2016-12-21T15:44:57Z (GMT). No. of bitstreams: 1 Rodrigo Silva Pereira_.pdf: 951778 bytes, checksum: 90c6af826318df7c8204565678dff935 (MD5) Previous issue date: 2016-08-28 / Nenhuma / Com a emergência do crowdsourcing junto a difusão mundial de smartphones esforços recentes e pesquisas importantes sobre o uso de crowdsourcing na área da saúde ou ainda smarthealth visam auxiliar na melhoria hábitos de saúde, construção de históricos médicos pessoais de longo prazo, análise e revisão de dados médica, controle de dietas alimentares, gerenciamento do estresse, analise e comparação de informações e assistência em tempo real para catástrofes. Porém, nenhum deles usou de crowdsourcing para recomendação de centros clínicos de saúde. Segundo Chatzimilioudis crowdsourcing refere-se "a um modelo distribuído de solução de problemas em que uma multidão de tamanho indefinido é contratada para resolver um problema complexo através de um convite aberto". Neste âmbito, este trabalho apresenta um modelo de sistema de recomendação de centros clínicos de saúde, chamado CrowdHealth. A principal contribuição do modelo de sistema de recomendação de centros clínicos é possibilitar a criação de uma relação ganha-ganha entre seus usuários que podem ser cidadãos, médicos ou ainda entidades ligadas ao governo. Na literatura encontramos alguns trabalhos que carecem a abordagem do uso de crowdsourcing como fonte de dados para recomendação de centros clínicos de saúde. Nós desenvolvemos um protótipo de aplicação baseada no modelo de sistema de recomendação de centros clínicos de saúde para proporcionar uma visão do que seria uma aplicação baseada no modelo de sistema de recomendação de centros clínicos de saúde. Para avaliar o nosso modelo, apresentamos um cenário hipotético baseado numa possível aplicação para mensurar a percepção dos usuários quanto a utilidade dos centros clínicos de saúde. Os cenários descritos levavam em consideração os seguintes critérios: (1) a distância entre do usuário ao centro clinico, (2) a avaliação dos usuários em relação ao atendimento recebido nos centros clínicos e (3) o tempo de atendimento informado pelos usuários. Desta forma realizamos uma simulação de requisições de recomendações de usuários usando um dataset real contendo informações do Foursquare. O arquivo do dataset possuia 227428 check-in’s na cidade de Nova Iorque, EUA. O arquivo, foi dividido em duas partes, onde a primeira representava os check-in’s realizados pelos usuários nos centros clínicos, e a segunda representava usuários requisitando por recomendações de centros clínicos em outros locais. Assim, foram criadas funções para simular os processos de cálculo do tempo de atendimento e avaliação dos centros clínicos por parte dos usuários. Também simulou-se usuários requisitando por recomendações de centros clínicos em outros locais. Então, medimos precisão e recuperação dos centros clínicos de saúde sugeridos para cada usuário. Obtivemos valores médios de 57,5% e 61,33% para precisão e recuperação, respectivamente. Com isso, nossa avaliação retrata que centros clínicos de saúde recomendados por uma aplicação baseada no CrowdHealth poderiam aumentar beneficamente a utilidade de centros clínicos de saúde recomendados para os usuários. / With the emergence of crowdsourcing with the worldwide spread of smartphones recent efforts and important research on the use of crowdsourcing in health or smart-health are intended to assist in improving health habits, construction of historical long-term medical personnel, medical analysis and data review, control diets, stress management, analysis and comparison of information and real-time assistance for disasters. However, none of them used the crowdsourcing for recommendation clinical health centers. In this context, this paper presents a model of clinical health centers recommendation system called CrowdHealth. The main contribution of clinical health centers recommendation system model is possible to create a win-win relationship between its users that can be citizens, doctors or entities linked to the government. In the literature we find some papers that require the use of crowdsourcing as a data source for recommendation clinical health centers approach. We have developed a prototype application based on clinical health centers recommendation system model to provide a vision of what would be an application based on the clinical health centers recommendation system model. To evaluate our model, we present a hypothetical scenario based on a possible application to measure the perception of users and the utility of clinical health centers. The scenarios described took into consideration the following criteria: (1) the distance from the user to the clinical center, (2) the evaluation of other users on the service received in the clinical centers and (3) the time of service reported by users. Thus we performed a simulation of user requests recommendations using a real dataset containing information of Foursquare. The file dataset haved 227428 check in’s in New York City, USA. The file was divided into two parts, where the first represented the textit check in ’s performed by users in clinical centers, and the second represented by requesting users polyclinics recommendations elsewhere. Thus, functions were created to simulate service time calculation and evaluation processes of polyclinics by users. Also users was simulated by ordering polyclinics recommendations elsewhere. So we measure precision and recall of health clinical centers suggested for each user. Average values obtained from 57.5 % and 61.33 % for precision and recall, respectively. Thus, our assessment that portrays clinical health centers recommended by an application based on CrowdHealth could increase beneficially the usefulness of clinical health centers recommended for users.