How Bioethics Principles Can Aid Design of Electronic Health Records to Accommodate Patient Granular Control

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, especially when principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and non-maleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper we show how using ethical principles can help in the design of EHRs by first, explaining how ethical principles can and should be used generally, and then by, discuss how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting further ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest

Designing privacy for scalable electronic healthcare linkage

A unified electronic health record (EHR) has potentially immeasurable benefits to society, and the current healthcare industry drive to create a single EHR reflects this. However, adoption is slow due to two major factors: the disparate nature of data and storage facilities of current healthcare systems and the security ramifications of accessing and using that data and concerns about potential misuse of that data. To attempt to address these issues this paper presents the VANGUARD (Virtual ANonymisation Grid for Unified Access of Remote Data) system which supports adaptive security-oriented linkage of disparate clinical data-sets to support a variety of virtual EHRs avoiding the need for a single schematic standard and natural concerns of data owners and other stakeholders on data access and usage. VANGUARD has been designed explicit with security in mind and supports clear delineation of roles for data linkage and usage

Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers

Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion

Developing a Framework for Creating mHealth Surveys

Various issues in the design of surveys for mobile health (mHealth) research projects yet exist. As mHealth solutions become more popular, new issues are brought into consideration. Researchers need to collect some critical information from participants in these mHealth studies. These mHealth studies require a specialized framework to create surveys, track progress and analyze user data. In these procedures, mHealth’s needs differ from other studies. Therefore, there has to be a new framework that satisfies needs of mHealth research studies. Although there are studies for creating efficient, robust and user-friendly surveys, there is no solution or study, which is specialized in mHealth area and solves specific problems of mHealth research studies. mHealth research studies sometimes require real-time access to user data. Reward systems may play a key role in their study. Most importantly, storing user information securely plays a key role in these studies. There is no such solution or study, which covers all these areas. In this thesis, we present guidelines for developing a framework for creating mHealth surveys. In doing this, we hope that we propose a solution for problems of creating and using of surveys in mHealth studies

Complete LibTech 2013 Print Program

PDF of the complete print program from the 2013 Library Technology Conferenc

Engaging persons with mental illness and/or substance use disorder in care coordination services: an improvement project at a federally qualified community health center

Background: Mental health and substance use disorders seldom occur in isolation. They frequently accompany each other, as well as a substantial number of chronic general medical illnesses. Consequently, mental health conditions, substance-use disorders, and general health conditions are frequently co-occurring, and coordination of all of these types of health care is essential to improved health outcomes (Institute of Medicine, 2006). The U.S. system of healthcare is failing to identify, engage, and effectively treat people who are suffering from behavioral health conditions (Blanco, Coye, Knickman, Krishnan, Krystal, Pincus, Rauch, Simon, Vitiello, 2016). Because of poor coordination and lack of engagement, people often experience disrupted care and an over-reliance on emergency department and hospital care. At Lowell Community Health Center where this project takes place persons with a primary behavioral health diagnosis contribute to the highest utilization of emergency and inpatient hospital services. In July of 2018, Lowell CHC collaborated with Lowell House, Inc. to form a care coordination program to outreach and engage individuals identified as high utilizers of inpatient and emergency hospital services. Aim: The aim of this project is to describe the attributes of the population of patients who successfully engaged into care for the first six months of this new program, with recommendations for improvement to inform future program design. Method: The population of patients who successfully engaged in care in the first 6 months of the program described by independent variables consisting of age, gender, race, and preferred language. Dependent variable consisting of type of outreach. Data was evaluated to determine attributes of patients who successfully engaged in care and if correlations exist between variables and successful engagement. Results: The first six months of the program implementation demonstrated successful engagement and activation of 17.5% of patients. The average patient is described as low-income, 50-64 years of age, non-English speaking female with dual-diagnosis residing in the greater Lowell area. Themes regarding successful outreach type included telephonic and face-to-face being the most successful method of engagement. Although successful engagement was noted, longer-term efforts and analysis should focus on successful outreach and engagement strategies, emergency room utilization, treatment adherence and service adherence. Conclusions: The findings of this project indicate that having a team-based, multidisciplinary and multi-cultural approach to care coordination has led to successful engagement of 186 individuals within the first 6 months of this new program

Unremarkable AI: Fitting Intelligent Decision Support into Critical, Clinical Decision-Making Processes

Clinical decision support tools (DST) promise improved healthcare outcomes by offering data-driven insights. While effective in lab settings, almost all DSTs have failed in practice. Empirical research diagnosed poor contextual fit as the cause. This paper describes the design and field evaluation of a radically new form of DST. It automatically generates slides for clinicians' decision meetings with subtly embedded machine prognostics. This design took inspiration from the notion of "Unremarkable Computing", that by augmenting the users' routines technology/AI can have significant importance for the users yet remain unobtrusive. Our field evaluation suggests clinicians are more likely to encounter and embrace such a DST. Drawing on their responses, we discuss the importance and intricacies of finding the right level of unremarkableness in DST design, and share lessons learned in prototyping critical AI systems as a situated experience