Healthcare Consumers’ Voluntary Adoption and Non-Adoption of Electronic Personal Health Records

The use and ready availability of electronic health records is broadly purported to have the potential to improve health outcomes for individual healthcare consumers, providers and the healthcare system as a whole. Unlike electronic health records that are created and managed by providers, personal health records (PHR) are controlled by the individual consumer and the persons/entities to which they choose to grant access. Studies show while more healthcare consumers have access to PHRs, their voluntary adoption is lagging. Yet, our understanding of adoption lag is also lacking. In this qualitative study, we investigate: (1) how individual healthcare users in Connecticut currently manage their personal health information, (2) whether they have adopted an electronic PHR and the considerations that influenced the volitional adoption or non-adoption of a PHR. Initial findings casts new and surprising understandings including how healthcare consumers would like to use PHRs

Adoption of Digital Allergy Card: A Mixed-Methods Approach

Due to the recent growth in the number of Personal Health Records (PHR) as well as the necessity for the development of digital solutions for reliable and accurate documentation of drug allergies, there is a need to explore digital solution as a Digital Allergy Card (DAC). Despite the advantage of using DAC, there are obstacles to taking this solution. While several studies raised privacy concerns as the key barrier to DAC adoption, there is no clear understanding of the variability of these concerns in relation to other factors which may overcome them. Therefore, drawing on situational privacy calculus theory, we propose a mixed-methods approach to assess the trade-off between perceived benefits and privacy concerns in different situations regarding DAC use. This study will provide insights to both academics and practitioners on PHR adoption by the identification of contextual determinants which can influence the adoption of a DAC

Making it work for me: beliefs about making a personal health record relevant and useable.

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

A Review On Electronic Personalized Health Records

In accordance with the current information communication technology growth up in widely used at everywhere. Therefore the implementation in ICT is highly assisted patient on their health.As the current technology can be access at everywhere in anytime,the electronic personalized health records are considered as the best solution for the patient to care and monitor their health.This research paper provides a cross review of relevant literature from the previous study in order to clarify the rationality.Its continue with reviewing, comparing and contrasting the existing studies in order to obtain the factors that influence the adoption of electronic personalized health records.A summary that clarifies the relation each factor has been mentioned serve as the foundation for this empirical analysis.In addition,a logical justification is provided concerning the theory based meta-analysis from other studies

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

A case study of stakeholder perceptions of patient held records: the Patients Know Best (PKB) solution

Introduction: Patients Know Best (PKB) provide a patient portal with integrated, patient controlled digital care record. Patient controlled personal health records facilitate coordinated management of chronic disease through improved communications among, and about patients across professional and organizational boundaries. An NHS foundation trust hospital has used PKB to support self-management in patients with Inflammatory Bowel disease; this paper presents a case study of usage. Methods: The Stakeholder Empowered Adoption Model provided a framework for consulting variously placed stakeholders. Qualitative interviews with clinical stakeholders and a patient survey. Results: Clinicians reported PKB to have enabled a new way of managing stable patients, this facilitated clinical and cost effective use of specialist nurses; improved two-way communications, and more optimal use of outpatient appointments and consultant time. The portal also facilitated a single, rationalised pathway for stable patients, enabling access to information and pro-active support. For patients, the system was a source of support when unwell and facilitated improved communication with specialists. Three main barriers to adoption were identified, these related to concerns over security; risk averse attitudes of users; and problems with data integration. Conclusions: Patient controlled personal health records offer significant potential in supporting self-management. Digital connection to healthcare can help patients to understand their condition better and access appropriate, timely clinical advice

A hybrid model for managing personal health records in South Africa

Doctors can experience difficulty in accessing medical information of new patients. One reason for this is that the management of medical records is mostly institution-centred. The lack of access to medical information may negatively affect patients in several ways. These include new medical tests that may need to be carried out at a cost to the patient and doctors prescribing drugs to which the patient is allergic. This research investigates how patients can play an active role in sharing their personal health records (PHRs) with doctors located in geographically separate areas. In order to achieve the goal of this research, existing literature concerning medical health records and standards was reviewed. A literature review of techniques that can be used to ensure privacy of health information was also undertaken. Interview studies were carried out with three medical practices in Port Elizabeth with the aim of contextualising the findings from the literature study. The Design Science Research methodology was used for this research. A Hybrid Model for Managing Personal Health Records in South Africa is proposed. This model allows patients to view their PHRs on their mobile phones and medical practitioners to manage the patients’ PHRs using a web-based application. The patients’ PHR information is stored both on a cloud server and on mobile devices hence the hybrid nature. Two prototypes were developed as a proof of concept; a mobile application for the patients and a web-based application for the medical practitioners. A field study was carried out with the NMMU health services department and 12 participants over a period of two weeks. The results of the field study were highly positive. The successful evaluation of the prototypes provides empirical evidence that the proposed model brings us closer to the realisation of ubiquitous access to PHRS in South Africa

Perceptions of online information privacy among individuals with Parkinson\u27s Disease

The growth in Internet use for health care is paralleled by the increase in chronic health conditions such as Parkinson’s disease (PD). This study explores the perceptions o f online privacy held by individuals with PD. Ten individuals with PD participated in hour-long, semi- structured, in-person interviews. Analysis of the transcripts yielded four major themes regarding participant perceptions: (1) online information privacy, including discussions o f private information, exceptions, and anonymity; (2) media, family, and friends as sources o f knowledge about online information safety; (3) reasons for privacy concerns, including physical vulnerability, the lack o f ‘people’ on the Internet, and attitudes toward privacy and disclosure; and, (4) non-privacy related reasons for non-use o f Internet resources. Highlighted aspects o f participant perceptions include: lack o f awareness concerning privacy legislation and online PD communities, the perceived value of online resources as factual not supportive, and inability to form bonds of trust in online relationships

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

Performance assessment of security mechanisms for cooperative mobile health applications

Mobile health (m-Health) applications aim to deliver healthcare services through mobile applications regardless of time and place. An mHealth application makes use of wireless communications to sustain its health services and often providing a patient-doctor interaction. Therefore, m-Health applications present several challenging issues and constraints, such as, mobile devices battery and storage capacity, broadcast constraints, interferences, disconnections, noises, limited bandwidths, network delays, and of most importance, privacy and security concerns. In a typical m-Health system, information transmitted through wireless channels may contain sensitive information such as patient’s clinic history, patient’s personal diseases information (e.g. infectious disease as HIV - human immunodeficiency virus). Carrying such type of information presents many issues related to its privacy and protection. In this work, a cryptographic solution for m-Health applications under a cooperative environment is proposed in order to approach two common drawbacks in mobile health systems: the data privacy and protection. Two different approaches were proposed: i) DE4MHA that aims to guarantee the best confidentiality, integrity, and authenticity of mhealth systems users data and ii) eC4MHA that also focuses on assuring and guarantying the m-Health application data confidentiality, integrity, and authenticity, although with a different paradigm. While DE4MHA considers a peer-to-peer node message forward, with encryption/decryption tasks on each node, eC4MHA focuses on simply encrypting data at the requester node and decrypting it when it reaches the Web service. It relays information through cooperative mobile nodes, giving them the only strictly required information, in order to be able to forward a request, until it reaches the Web service responsible to manage the request, and possibly answer to that same request. In this sense, the referred solutions aim any mobile health application with cooperation mechanism embedded. For test purposes a specific mobile health application, namely SapoFit, was used. Cryptographic mechanisms were created and integrated in SapoFit application with built in cooperation mechanisms. A performance evaluation of both approaches in a real scenario with different mobile devices is performed and presented in this work. A comparison with the performance evaluations of both solutions is also presented.Fundação para a Ciência e a Tecnologia (FCT)European Community Fund FEDER through COMPETE – Programa Operacional Factores de Competitividad