Personal Health Record Systems as Boundary Objects

Personal health record systems are widely available and regarded as a key element in the push for electronic health records and the meaningful use of technology in medicine. However, the adoption and use of these systems has been much lower than anticipated. While research has investigated the reasons for this lack of adoption, we have no satisfactory answers. As such, we undertook a qualitative research study in a medical clinic setting to investigate them. We focused on identifying how the unique user groups who interacted with these personal health record systems viewed their use and impact. We specifically examined three different perspectives on these systems; physician, patient, and medical staff (e.g., nurses, receptionists). We found that personal health record systems function as boundary objects that reflect significantly different meanings to the various user groups who interact with them. Our results show that patients largely view these systems as non-essential adjuncts to their current care routine, physicians see the systems as tools, and medical staff members view them as an additional task or chore with questionable effectiveness. This new conceptualization of these systems as boundary objects has significant implications for their design and use

Patient Sociotechnical Assemblages: The Distributed Cognition of Health Information Management

Personal health records (PHR) are shifting the capabilities and responsibilities of both patients and providers. Influenced by health IT, concepts like patient-centered care, meaningful use, and patient empowerment are commonplace in the healthcare system. As the popularity of personal health records increases, medical providers, healthcare organizations, and health information system stakeholders require a thorough understanding of how patients use these patient facing information portals in conjunction with other artifacts, objects, and practices to manage and maintain their health. Exploring health information management as a distributed sociotechnical assemblage is the conceptual approach of this research. A distributed cognition perspective lends insight to drawing boundaries and establishing connections of personal health information management practices in conjunction with PHR use. The Department of Veterans Affairs provides a unique setting to further understand PHR use and personal health information management practice through the observation of U.S. military veterans enrolled in the My HealtheVet PHR. This context and conceptual framework lead to the research questions for the proposed study: RQ1a: What are the personal health information management practices of veterans who use a personal health record? RQ1b: What health information management practices become distributed beyond the veteran patient? RQ2a: What health information management assemblages emerge from the distributed work of Veterans that use a personal health record? RQ2b: What are key functions of the health information management assemblages of veterans? Through the use of semi-structured in depth interviews, observations, and surveys, data were collected on 22 patients along with their primary care providers and caretakers. Results from a two cycle qualitative coding analysis and analytical cognitive mapping technique reveal bundles of practices for creating reminders, organizing information, and creating information for asking questions and working with primary care providers. Distributed practices emerged that detail the managing of medication, information that is socially distributed, and patient-provider communication through secure messaging. Three health information management assemblage components emerged from the analysis: health events and experiential information, information techniques, and technology and material practices. Each of these components is understood by the ways they become stabilized or destabilized. This research contributes to implications for the design of patient-focused personal health records and informs clinical practice of patient-centered care. The research also makes conceptual and empirical contributions to the practice of health information management and a patient-centered care model of healthcare delivery

Designing an architecture for secure sharing of personal health records : a case of developing countries

Includes bibliographical references.While there has been an increase in the design and development of Personal Health Record (PHR) systems in the developed world, little has been done to explore the utility of these systems in the developing world. Despite the usual problems of poor infrastructure, PHR systems designed for the developing world need to conform to users with different models of security and literacy than those designed for developed world. This study investigated a PHR system distributed across mobile devices with a security model and an interface that supports the usage and concerns of low literacy users in developing countries. The main question addressed in this study is: “Can personal health records be stored securely and usefully on mobile phones?” In this study, mobile phones were integrated into the PHR architecture that we/I designed because the literature reveals that the majority of the population in developing countries possess mobile phones. Additionally, mobile phones are very flexible and cost efficient devices that offer adequate storage and computing capabilities to users for typically communication operations. However, it is also worth noting that, mobile phones generally do not provide sufficient security mechanisms to protect the user data from unauthorized access

Design Strategy for Integrated Personal Health Records: Improving the User Experience of Digital Healthcare and Wellbeing

This dissertation addresses the timely problem of designing Integrated Personal Health Records (PHR). The goal is to provide citizens with digital user experiences, sustainable and flexible enough, for gaining control over their personal health information in a seamless way. Most importantly, so that people are able to reflect and act upon their selfknowledge, towards the accomplishment of their good health and wellbeing. Towards this end, the Integrated PHR as an emerging model in the field of Health IT, was the framework that set this research forward on exploring how communication and collaboration between patients and providers can be improved, which naturally impacts the field of HCI. Acknowledging that today patients are the ones who own all that is recorded about their health data, this new model was object of a design strategy that shaped the results presented in this dissertation. These have showed how patients can have more control of their health over time, through a patient-centered, organic system, which has the ability of combining multiple sources of data both from patient and provider side. As this new type of PHR fosters the creation of integrated networks, this milestone was achieved in this research by interacting with cross-channel user experiences that took part of nationwide healthcare ecosystems. The work presented herein, has demonstrated through the analysis and development of two use cases in cooperation with organizations connected to the Portuguese Ministry of Health, how an Integrated PHR can be a powerful personal tool, to be used by the citizen with undeniable value to the demands of an aging society. The use cases structured the thesis into two parts. The first part in collaboration with the Portuguese National Patient Portal, combines an Integrated PHR and incorporates the Portuguese Data Sharing Platform (PDS), which can be used by any Portuguese citizen. This use case study led to a proposal of the portal by also creating a foundational model for designing Integrated PHRs. The second part in collaboration with the Portuguese National Senior Telehealth Program (Saúde 24 Sénior), led to another proposal for an Integrated PHR, applying the outcomes from Part 1 and the requirements that derived from the findings explored in this second use case study. The proposed solution, has the potential to be used by the Portuguese senior community in the scope of home assistive care. Both proposals applied a user experience design methodology and included the development of two prototypes. The engagement of the stakeholders during the two case studies was accomplished with participatory design methods and followed a multidisciplinary approach to create solutions that would meet the human, politics and behavior interdependencies that were inherent to the process of working with large healthcare organizations. The provided contributions from this thesis intent to be part of a transition process that is changing the behavior of the healthcare sector, which is increasingly moving towards the improvement of the patient-provider relationship, patient engagement, collaborative care and positive computing, where digital technologies play a key role

Architectural Constraints on the Bootstrapping of a Personal Health Record

During the last decade we have seen a proliferation of electronic personal health record systems (PHRs) aiming to change the way people manage and receive healthcare. However, many of these initiatives have failed to take-off. We inquire into such unsatisfactory outcomes by drawing upon the perspective proposed in the information infrastructure (II) literature. This literature views the value of PHRs as dependent on the number of actors using them. This poses a challenge for designers (referred to as ‘bootstrapping’): how to persuade users to adopt a PHR when the user base is still small. To address the bootstrap- ping challenge, II literature suggests starting with a simple solution that creates immediate user value and enables users to enroll gradually. This paper seeks to explore how PHR architecture can hinder PHR bootstrapping through a longitudinal case study on the implementation of an integrated PHR. Our case analysis identifies four architectural constraints: poor data quality; coordination across heterogeneity; privacy and control; and re-configurability. This paper concludes by discussing the implications of the findings for the literature on personal and electronic health records and on the design of information infrastructures

Patient Health Record Systems Scope and Functionalities: Literature Review and Future Directions

Background: A new generation of user-centric information systems is emerging in health care as patient health record (PHR) systems. These systems create a platform supporting the new vision of health services that empowers patients and enables patient-provider communication, with the goal of improving health outcomes and reducing costs. This evolution has generated new sets of data and capabilities, providing opportunities and challenges at the user, system, and industry levels. Objective: The objective of our study was to assess PHR data types and functionalities through a review of the literature to inform the health care informatics community, and to provide recommendations for PHR design, research, and practice. Methods: We conducted a review of the literature to assess PHR data types and functionalities. We searched PubMed, Embase, and MEDLINE databases from 1966 to 2015 for studies of PHRs, resulting in 1822 articles, from which we selected a total of 106 articles for a detailed review of PHR data content. Results: We present several key findings related to the scope and functionalities in PHR systems. We also present a functional taxonomy and chronological analysis of PHR data types and functionalities, to improve understanding and provide insights for future directions. Functional taxonomy analysis of the extracted data revealed the presence of new PHR data sources such as tracking devices and data types such as time-series data. Chronological data analysis showed an evolution of PHR system functionalities over time, from simple data access to data modification and, more recently, automated assessment, prediction, and recommendation. Conclusions: Efforts are needed to improve (1) PHR data quality through patient-centered user interface design and standardized patient-generated data guidelines, (2) data integrity through consolidation of various types and sources, (3) PHR functionality through application of new data analytics methods, and (4) metrics to evaluate clinical outcomes associated with automated PHR system use, and costs associated with PHR data storage and analytics

Patient generated health data and electronic health record integration, governance and socio-technical issues: A narrative review

Patients’ health records have the potential to include patient generated health data (PGHD), which can aid in the provision of personalized care. Access to these data can allow healthcare professionals to receive additional information that will assist in decision-making and the provision of additional support. Given the diverse sources of PGHD, this review aims to provide evidence on PGHD integration with electronic health records (EHR), models and standards for PGHD exchange with EHR, and PGHD-EHR policy design and development. The review also addresses governance and socio-technical considerations in PGHD management. Databases used for the review include PubMed, Scopus, ScienceDirect, IEEE Xplore, SpringerLink and ACM Digital Library. The review reveals the significance, but current deficiency, of provenance, trust and contextual information as part of PGHD integration with EHR. Also, we find that there is limited work on data quality, and on new data sources and associated data elements, within the design of existing standards developed for PGHD integration. New data sources from emerging technologies like mixed reality, virtual reality, interactive voice response system, and social media are rarely considered. The review recommends the need for well-developed designs and policies for PGHD-EHR integration that promote data quality, patient autonomy, privacy, and enhanced trust

Is There an App for That? Electronic Health Records (EHRs) and a New Environment of Conflict Prevention and Resolution

Katsh discusses the new problems that are a consequence of a new technological environment in healthcare, one that has an array of elements that makes the emergence of disputes likely. Novel uses of technology have already addressed both the problem and its source in other contexts, such as e-commerce, where large numbers of transactions have generated large numbers of disputes. If technology-supported healthcare is to improve the field of medicine, a similar effort at dispute prevention and resolution will be necessary