Patient Access to Electronic Health Records: Strengths, weaknesses and what’s needed to move forward

Electronic health records (EHRs) are desired by both physicians and patients, but the transition to and acceptance of sensitive health information online has been slow. This paper reviews the current literature on EHR adoption and outlines barriers, advantages and explicit steps for moving toward the EHR ubiquity. Potential benefits of EHRs to patients and physicians include reduced costs for patients, hospitals and insurance providers, patient empowerment, less errors in records and better health outcomes, but security and privacy concerns, cost of implementation and poor electronic records management system design have proved barriers to adoption

Data privacy by design: digital infrastructures for clinical collaborations

The clinical sciences have arguably the most stringent security demands on the adoption and roll-out of collaborative e-Infrastructure solutions such as those based upon Grid-based middleware. Experiences from the Medical Research Council (MRC) funded Virtual Organisations for Trials and Epidemiological Studies (VOTES) project and numerous other real world security driven projects at the UK e-Science National e-Science Centre (NeSC – www.nesc.ac.uk) have shown that whilst advanced Grid security and middleware solutions now offer capabilities to address many of the distributed data and security challenges in the clinical domain, the real clinical world as typified by organizations such as the National Health Service (NHS) in the UK are extremely wary of adoption of such technologies: firewalls; ethics; information governance, software validation, and the actual realities of existing infrastructures need to be considered from the outset. Based on these experiences we present a novel data linkage and anonymisation infrastructure that has been developed with close co-operation of the various stakeholders in the clinical domain (including the NHS) that addresses their concerns and satisfies the needs of the academic clinical research community. We demonstrate the implementation of this infrastructure through a representative clinical study on chronic diseases in Scotland

Web Vulnerability Study of Online Pharmacy Sites

Consumers are increasingly using online pharmacies, but these sites may not provide an adequate level of security with the consumers’ personal data. There is a gap in this research addressing the problems of security vulnerabilities in this industry. The objective is to identify the level of web application security vulnerabilities in online pharmacies and the common types of flaws, thus expanding on prior studies. Technical, managerial and legal recommendations on how to mitigate security issues are presented. The proposed four-step method first consists of choosing an online testing tool. The next steps involve choosing a list of 60 online pharmacy sites to test, and then running the software analysis to compile a list of flaws. Finally, an in-depth analysis is performed on the types of web application vulnerabilities. The majority of sites had serious vulnerabilities, with the majority of flaws being cross-site scripting or old versions of software that have not been updated. A method is proposed for the securing of web pharmacy sites, using a multi-phased approach of technical and managerial techniques together with a thorough understanding of national legal requirements for securing systems

Electronic health record portals in Portugal : a perspective from providers and patients

Dissertation presented as the partial requirement for obtaining a Master's degree in Information Management, specialization in Knowledge Management and Business IntelligenceHealthcare systems are becoming more patient centered, as today’s citizens are more active and more informed. In line with this trend, healthcare providers are promoting the use of online applications such as Electronic Health Record (EHR) portals. EHR portals can be defined as web based applications that combine an EHR system and a patient portal, with the potential of helping to achieve benefits for both patients and healthcare providers, which makes the adoption of EHR portals an important field to study and understand. The aim of this study is to characterize the view from providers and patients on EHR portals, having the Portuguese health system as scenario. The methodology was divided into a provider-centered and a patient-centered approach, being characterized as a mixed-methods research as qualitative and quantitative data collection procedures were followed. Results point out that EHR portals are considered by providers as crucial in the establishment of a digital relationship with patients, but efforts still need to be carried out for the users to adhere to these technologies. Also, the portals available in Portugal are heterogeneous in terms of functionalities offered, greatly differing in terms of number of functionalities. Patients view some functionalities of EHR portals more important than others and half of them are users of the portal developed by the public provider. The statistically determinants of adoption of EHR portals were verified. By having the perspective of providers and users, it was possible to provide insights that can be helpful to develop EHR portals that meet patient demands

Health Information Exchanges and Patient Portals in Behavioral Health

We live in an electronic world. Technology is everywhere, including in our healthcare system. With the advent on the electronic health record and the push to meet Meaningful Use, many healthcare organizations have already started using patient portals and sharing information among providers via health information exchanges. There have been roadblocks to successful implantation of patient portals and health information exchanges, one of which is how to handle behavioral health information and would these new technologies be accepted by patients with mental health diagnose

Consumers\u27 Perceptions of Patient-Accessible Electronic Medical Records

Background: Electronic health information (eHealth) tools for patients, including patient-accessible electronic medical records (patient portals), are proliferating in health care delivery systems nationally. However, there has been very limited study of the perceived utility and functionality of portals, as well as limited assessment of these systems by vulnerable (low education level, racial/ethnic minority) consumers. Objective: The objective of the study was to identify vulnerable consumers’ response to patient portals, their perceived utility and value, as well as their reactions to specific portal functions. Methods: This qualitative study used 4 focus groups with 28 low education level, English-speaking consumers in June and July 2010, in New York City. Results: Participants included 10 males and 18 females, ranging in age from 21-63 years; 19 non-Hispanic black, 7 Hispanic, 1 non-Hispanic White and 1 Other. None of the participants had higher than a high school level education, and 13 had less than a high school education. All participants had experience with computers and 26 used the Internet. Major themes were enhanced consumer engagement/patient empowerment, extending the doctor’s visit/enhancing communication with health care providers, literacy and health literacy factors, improved prevention and health maintenance, and privacy and security concerns. Consumers were also asked to comment on a number of key portal features. Consumers were most positive about features that increased convenience, such as making appointments and refilling prescriptions. Consumers raised concerns about a number of potential barriers to usage, such as complex language, complex visual layouts, and poor usability features. Conclusions: Most consumers were enthusiastic about patient portals and perceived that they had great utility and value. Study findings suggest that for patient portals to be effective for all consumers, portals must be designed to be easy to read, visually engaging, and have user-friendly navigation

Identifying Barriers that Affect Patients Access to their Patient Portals and MHealth Applications

Technological advances have generated new resources that allow patients to be more involved in their healthcare. As different innovations find their way into the informatics sector of healthcare, patients experience some challenges as they try to adopt these innovations. One particular innovation in healthcare has been the use of patient portals to promote patient engagement, which will encourage patients to take on a more active role in their healthcare. This study focused in exploring the barriers in the access of MyChart portal at Baptist Memorial Care Corporation and, to some extent, how to handle this problem. An online survey questionnaire was sent to 22 randomly selected support agents and face-to-face interviews were scheduled with 5 of these participants. Data obtained from the 19 respondents who responded to the questions and the five interviewees revealed that the major barrier to patient portal access is the lack of computer or phone skills. At the same time, proxy access problems were identified as another challenge

Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.Comment: DSS 2018: Data-Driven Self-Regulating System