Designing for privacy management in hospitals: Understanding the gap between user activities and IT staff’s understandings

PurposeWe examined the role of privacy in collaborative clinical work and how it is understood by hospital IT staff. The purpose of our study was to identify the gaps between hospital IT staff members’ perceptions of how electronic health record (EHR) users’ protect the privacy of patient information and how users actually protect patients’ private information in their daily collaborative activities. Since the IT staff play an important role in implementing and maintaining the EHR, any gaps that exist between the IT staff’s perceptions of user work practices and the users’ actual work practices can result in a number of problems in the configuration, implementation, or customization of the EHR, which can lead to collaboration challenges, interrupted workflow, and privacy breaches.MethodsWe used qualitative data collection methods for this study. We conducted semi-structured interviews with 20 hospital IT staff members. We also conducted observations of EHR users in the in-patient units of the same hospital.ResultsWe identified gaps in IT staff’s understandings of users’ work activities, especially in regards to privacy-compromising workarounds that are used by users and why they are used.DiscussionWe discuss the reasons why this gap may exist between IT staff and users and ways to improve IT staff's understanding of why users perform certain privacy-compromising workarounds.ConclusionA hospital’s IT staff face a daunting task in ensuring users’ collaborative work practices are supported by the system while providing effective privacy mechanisms. In order to achieve both goals, the IT staff must have a clear understanding of their users’ practices. However, as this study highlights, there may be a mismatch between the IT staff’s understandings of how users protect patient privacy and how users actually protect privacy.     

User profiles and personas in the design and development of consumer health technologies

Background“The graying of the globe” has resulted in exponential rise in health care expenses, over-worked health care professionals and a growing patient base suffering from multiple chronic diseases, one of which is diabetes. Consumer health technologies (CHT) are considered important catalysts for empowering health care consumers to take a proactive role in managing their health and related costs. Adoption rate and usability of such devices among the aging is far from being satisfactory. Past studies noted the motivation for adoption by the aging is dependent on the suitability/relevance, perceived usability and anticipated benefits associated with usage of technological innovation. Traditional information technology (IT) development adopts a systematic approach without necessarily using a specific user model that personalizes the system to the aging user groups. The aging patient population has unique needs arising from progressive deterioration in both physiological and psychological abilities. These needs are often ignored in the design, development, trial and adoption of consumer health products resulting in low adoption and usage.ObjectivesThe main objective of this research is to investigate the user-centered design (UCD), specifically user profiles and personas, as methodological tools to inform the design and development of CHT devices for an aging population. The adoption of user profile and persona has not received much attention in health care informatics research and, in particular, research involving CHT. Our work begins to fill this void in three ways. We (1) illuminate the process of developing CHT user profiles and personas for a Chinese elder population with a demanding health care needs, i.e., self-management of chronic diabetes, with the hope that the resulting profiles and personas may be used as foundational material for informing the design, development and evaluation of CHT in other similar contexts; (2) call attention to how to further enhance and complement traditional user profile and persona techniques for CHT design by integrating cognitive structures and present behavior that drive health care thinking, future behavior and demand; (3) show how the profiles and personas can be used to inform requirements, design and implementation decisions for a technology aimed at facilitating CHT adoption and diffusion for the elderly.MethodologyTo exemplify process and application, we use an action-research methodology, where user profiles and personas of an aging patient population were developed. The resultant profiles and personas were leveraged to improve the design, development and implementation plans of a smart phone application to assist chronically ill aging Chinese diabetic population capable of disease self-management.ResultsThe results from the study show that user profile and persona can be a valuable methodological approach in capturing the conceptual model of the aging and informing the design and development decisions of CHT. The demonstration of techniques used in this study can serve as a guideline to CHT developers in bringing conceptual user modeling into the design of software interfaces targeted for users with specific health care needs. Specifically, the study provides guidance on the creation and use of profiles and personas to tap into the conceptual models of the targeted elderly population reflecting their preferences, capabilities and attitudes towards using technology in self-management care in general and the smart phone diabetes management application in particular. Insight into the mental model of the aging group has been shown to inform later stages of UCD development (e.g., the creation of prototypes and usability testing) as well as implementation and adoption strategies. The World Health Organization (WHO) predicts that by 2025, 80% of all new cases of diabetes are expected to appear in the developing countries. In fact, the number of diabetic patients in China is estimated to rise to 42.3 million in 2030 from 20.8 million in 2000. Thus, we investigate the Chinese aging population in order to demonstrate the process of developing and using user profile and persona. We hope that the resultant conceptual model of the Chinese aging diabetic population can be used in future research to guide CHT designers interested in designing health care devices for this vulnerable user group.     

Organizational framework for health information technology

PurposeWe do not yet know how best to design, implement, and use health information technology (IT). A comprehensive framework that captures knowledge on the implementation, use, and optimization of health IT will help guide more effective approaches in the future.MethodsThe authors conducted a targeted review of existing literature on health IT implementation and use, including health IT-related theories and models. By crosswalking elements of current theories and models, the authors identified five major facets of an organizational framework that provides a structure to organize and capture information on the implementation and use of health IT.ResultsThe authors propose a novel organizational framework for health IT implementation and use with five major facets: technology, use, environment, outcomes, and temporality. Each major facet is described in detail along with associated categories and measures.ConclusionThe proposed framework is an essential first step toward ensuring a more consistent and comprehensive understanding of health IT implementation and use and a more rigorous approach to data collection, measurement development, and theory building.     

Women's health and complexity science.

Conceptual frameworks in science have shifted from reductionism and its focus on ever-smaller parts to complexity, an outgrowth of chaos theory that views those parts in relation to one another, to the larger entity they form and to the environment in which that entity exists. Examples of this conceptual shift are occurring in many areas of science, but nowhere is it more germane than in the medical sciences that serve women. After a historical focus on reproduction and the development of obstetrics-gynecology, medicine has now gained a broader view of the woman using sex- and gender-based science, and a new field called "women's health" is evolving. Complexity science does not invalidate or eliminate the need for reductionist science, it simply makes a wider array of phenomena understandable. Its method allows going beyond the metaphor of the body as a machine and challenges the user to re-examine how health and illness are understood. This article explores how these changes in science must inform the development of an academic discipline in women's health. The conceptual framework of complexity science also advances the discussions about women's health from reproduction to a totally new and exciting exploration of the interactions between reproduction and all other organ functioning that occurs in women in the contexts of their lives.     

Electronic patient records and innovation in health care services.

The approach of today's EPR seems so narrowly focused on automation of the existing paper-based records by means of information technology that it becomes obvious to raise the question: 'Will these automation efforts become an impediment to innovation in products and services in health care?'. This paper discusses how objectives like improvements and innovations in products and services in health care are met by means of information technology (IT), and it argues that a shift of focus from technological innovation to innovation in products and services is necessary in order to obtain maximum benefit from IT.     

Cognitive engineering and health informatics: Applications and intersections

Cognitive engineering is an applied field with roots in both cognitive science and engineering that has been used to support design of information displays, decision support, human-automation interaction, and training in numerous high risk domains ranging from nuclear power plant control to transportation and defense systems. Cognitive engineering provides a set of structured, analytic methods for data collection and analysis that intersect with and complement methods of Cognitive Informatics. These methods support discovery of aspects of the work that make performance challenging, as well as the knowledge, skills, and strategies that experts use to meet those challenges. Importantly, cognitive engineering methods provide novel representations that highlight the inherent complexities of the work domain and traceable links between the results of cognitive analyses and actionable design requirements. This article provides an overview of relevant cognitive engineering methods, and illustrates how they have been applied to the design of health information technology (HIT) systems. Additionally, although cognitive engineering methods have been applied in the design of user-centered informatics systems, methods drawn from informatics are not typically incorporated into a cognitive engineering analysis. This article presents a discussion regarding ways in which data-rich methods can inform cognitive engineering.     

The significance of cognitive modeling in building healthcare interfaces

BACKGROUND: Although there are many reasons that widespread adoption of healthcare information systems has not transpired, one reason is a failure to take into account the cognitive needs of the users. AIM: To understand the cognitive needs of nurses and physicians and determine how these needs should influence the design of healthcare interfaces. DESIGN OF STUDY: A qualitative and quantitative study that compares how nurses and physicians comprehend patient information. SETTING: Twenty-four registered nurses and twenty-four physicians working in the specialties of gastrointestinal or internal medicine. METHODS: Each clinician reviewed two mock electronic medical records and summarized the cases using a think-aloud protocol. All verbalizations were coded for medical and conceptual information. RESULTS: The nurses included a larger mean proportion (p<0.001) of recalls than did the physicians. As compared to the nurses, the physicians included a statistically significant (p<0.001) larger mean proportion of inferences, conditional statements, and interventions. The nurses concentrated on functional problems, whereas the physicians focused on diagnosis, treatment, and management. CONCLUSION: The main cognitive differences between the physicians and the nurses are explained through the differences in their practice models. Therefore, healthcare IT must develop separate interfaces for each discipline to address their unique needs.     

Requirements and prototyping of a home health care application based on emerging JAVA technology

IT support for home health care is an expanding area within health care IT development. Home health care differs from other in- or outpatient care delivery forms in a number of ways, and thus, the introduction of home health care applications must be based on a rigorous analysis of necessary requirements to secure safe and reliable health care. This article reports early experiences from the development of a home health care application based on emerging JAVA technologies. A prototype application for the follow-up of diabetes patients is presented and discussed in relation to a list of general requirements on home health care applications.     

Uncertainty in health care: Towards a more systematic program of research

ObjectiveTo promote a more systematic approach to research on uncertainty in health care, and to explore promising starting points and future directions for this research.MethodsWe examine three fundamental aspects of medical uncertainty that a systematic research program should ideally address: its nature, effects, and communication. We summarize key insights from past empirical research and explore existing conceptual models that can help guide future research.ResultsA diverse body of past research on medical uncertainty has produced valuable empirical insights and conceptual models that provide useful starting points for future empirical and theoretical work. However, these insights need to be more fully developed and integrated to answer remaining questions about what uncertainty is, how it affects people, and how and why it should be communicated.ConclusionUncertainty in health care is an extremely important but incompletely understood phenomenon. Improving our understanding of the many important aspects of uncertainty in health care will require a more systematic program of research based upon shared, integrative conceptual models and active, collaborative engagement of the broader research community.Practice ImplicationsA more systematic approach to investigating uncertainty in health care can help elucidate how the clinical communication of uncertainty might be improved.     

Expanding multi-disciplinary approaches to healthcare information technologies: what does information systems offer medical informatics?

The effective use of information technology (IT) is a crucial component for the delivery of effective services in health care. Current approaches to medical informatics (MI) research have significantly contributed to the success of IT use in health care but important challenges remain to be addressed. We believe that expanding the multi-disciplinary basis for MI research is important to meeting these research challenges. In this paper, we outline theories and methods used in information systems (IS) research that we believe can inform our understanding of health care IT applications and outcomes. To do so, we discuss some general differences in the focus and methods of MI and IS research to identify broad opportunities. We then review conceptual and methodological approaches in IS that have been applied in health care IT research. These include: technology-use mediation, collaborative work, genre theory, interpretive research, action research, and modeling. Examples of these theories and methods in healthcare IS research are illustrated.     

Predicting treatment process steps from events

MotivationThe primary economy-driven documentation of patient-specific information in clinical information systems leads to drawbacks in the use of these systems in daily clinical routine. Missing meta-data regarding underlying clinical workflows within the stored information is crucial for intelligent support systems. Unfortunately, there is still a lack of primary clinical needs-driven electronic patient documentation. Hence, physicians and surgeons must search hundreds of documents to find necessary patient data rather than accessing relevant information directly from the current process step. In this work, a completely new approach has been developed to enrich the existing information in clinical information systems with additional meta-data, such as the actual treatment phase from which the information entity originates.MethodsStochastic models based on Hidden Markov Models (HMMs) are used to create a mathematical representation of the underlying clinical workflow. These models are created from real-world anonymized patient data and are tailored to therapy processes for patients with head and neck cancer. Additionally, two methodologies to extend the models to improve the workflow recognition rates are presented in this work.ResultsA leave-one-out cross validation study was performed and achieved promising recognition rates of up to 90% with a standard deviation of 6.4%.ConclusionsThe method presented in this paper demonstrates the feasibility of predicting clinical workflow steps from patient-specific information as the basis for clinical workflow support, as well as for the analysis and improvement of clinical pathways.     

Ethical issues in public health informatics: implications for system design when sharing geographic information

Public health programs today constitute a multi-professional inter-organizational environment, where both health service and other organizations are involved. Developing information systems, including the IT security measures needed to suit this complex context, is a challenge. To ensure that all involved organizations work together towards a common goal, i.e., promotion of health, an intuitive strategy would be to share information freely in these programs. However, in practice it is seldom possible to realize this ideal scenario. One reason may be that ethical issues are often ignored in the system development process. This investigation uses case study methods to explore ethical obstacles originating in the shared use of geographic health information in public health programs and how this affects the design of information systems. Concerns involving confidentiality caused by geographically referenced health information and influences of professional and organizational codes are discussed. The experience presented shows that disregard of ethical issues can result in a prolonged development process for public health information systems. Finally, a theoretical model of design issues based on the case study results is presented.     

Prospective medicine: the next health care transformation.

The introduction of science into the practice of medicine in the early 20th century was a transforming event for the profession. Now, breakthroughs in science and know how make it possible to transform care once again and to fix the broken U.S. health care system. To realize this potential, new models of prospective health care must be created and validated. Prospective health care would determine the risk for individuals to develop specific diseases, detect the disease's earliest onset, and prevent or intervene early enough to provide maximum benefit. Each individual would have a personalized health plan to accomplish this. Current knowledge is already sufficient to implement this approach, but there are no effective practice models, delivery systems, and appropriate reimbursement mechanisms. The authors describe the mechanisms of managing care prospectively, describe the components of a personalized health plan, and show how prospective care could relate to a community or group of covered individuals. They conclude by stressing that all interested parties, including academic health centers, insurers, and payers, will need to work together to develop innovative applications of new technologies and appropriate delivery models. At their own institution, pilot programs to foster prospective health care have already begun, and another initiative to develop models to use genomic medicine is also underway. Bipartisan political support will also be needed to help achieve rational reimbursement between providers and payers, so that prospective care can fulfill its promise of being the best cost-effective model to improve the nation's health.     

Modelling and implementing electronic health records in Denmark

The Danish Health IT strategy [Danish Ministry of Interior and Health, National Strategy for IT in the Health Sector 2003-2007, Copenhagen, 2003 (in Danish). http://www.im.dk/publikationer/itstrategi/itstrategi.pdf. notes that integration between electronic health records (EHR) systems has a high priority. A prerequisite for real integration and semantic interoperability is agreement of the data content and the information models. The National Board of Health is working on a common model for EHR, and its adoption is now being promoted through pilot projects. At the same time, several development and implementation projects are taking place at a regional level. These EHRs are built on information models from different vendors and are based on different integration platforms. The Danish EHR observatory, which has been monitoring the development of EHRs in Denmark since 1998, has analysed the challenges of using different information models and integration platforms. This paper also maps the development in Denmark to the new paradigms in modelling techniques and integration technology.     

A conceptual framework and principles for trusted pervasive health

Background

Ubiquitous computing technology, sensor networks, wireless communication and the latest developments of the Internet have enabled the rise of a new concept—pervasive health—which takes place in an open, unsecure, and highly dynamic environment (ie, in the information space). To be successful, pervasive health requires implementable principles for privacy and trustworthiness.

Objective

This research has two interconnected objectives. The first is to define pervasive health as a system and to understand its trust and privacy challenges. The second goal is to build a conceptual model for pervasive health and use it to develop principles and polices which can make pervasive health trustworthy.

Methods

In this study, a five-step system analysis method is used. Pervasive health is defined using a metaphor of digital bubbles. A conceptual framework model focused on trustworthiness and privacy is then developed for pervasive health. On that model, principles and rules for trusted information management in pervasive health are defined.

Results

In the first phase of this study, a new definition of pervasive health was created. Using this model, differences between pervasive health and health care are stated. Reviewed publications demonstrate that the widely used principles of predefined and static trust cannot guarantee trustworthiness and privacy in pervasive health. Instead, such an environment requires personal dynamic and context-aware policies, awareness, and transparency. A conceptual framework model focused on information processing in pervasive health is developed. Using features of pervasive health and relations from the framework model, new principles for trusted pervasive health have been developed. The principles propose that personal health data should be under control of the data subject. The person shall have the right to verify the level of trust of any system which collects or processes his or her health information. Principles require that any stakeholder or system collecting or processing health data must support transparency and shall publish its trust and privacy attributes and even its domain specific policies.

Conclusions

The developed principles enable trustworthiness and guarantee privacy in pervasive health. The implementation of principles requires new infrastructural services such as trust verification and policy conflict resolution. After implementation, the accuracy and usability of principles should be analyzed.     

Collaboration--a new IT-service in the next generation of regional health care networks

During the past 10–15 years, Regional Health Care Networks (RHCN) have been established in many regions throughout the world. RHCN build on well-known techniques, methodologies and appropriate standards. Most of the European Countries today have set up IT strategic plans that focus on the establishment of RHCN. The benefits of having access to all relevant information are tremendous and contribute to cost-effective and coherent health services. By the rapid spread and use of Internet, technology has made it possible to interconnect all kinds of applications. In 2000, the most experienced regions in Europe joined PICNIC, a European project to develop the Next Generation Regional Health Care Networks and to support their new ways of providing health and social care. The previous generation of Regional Health Care Networks supported the interconnection of applications by transfer of messages. Messaging is an effective means of integration for isolated high-specialised systems that only need to exchange data. This service will continue to be one of the most important services in the future health care networks. However, tighter coupling may be desirable in some instances to avoid replicating the same functionality in several applications. In other words, certain services can be common and used by a number of applications instead of building that service inside each application. These common services are called middleware services. In PICNIC (http://www.medcom.dk/picnic), a new middleware Collaboration IT service has been identified and developed. This service allows the end users to perform real-time clinical collaboration, with exchange of text, structured data, voice and images across the limits of a single region. A clinical collaboration is associated with the shared clinical context to provide a record of relevant clinical information and facilitates synchronous as well as asynchronous collaboration. This new IT service builds on the increasing popularity of instance messaging and presence systems that facilitate smooth transition between synchronous and asynchronous interaction. The new Collaboration IT service is expected to have a strong impact on the practice of health care in the next generation of Regional Health Care Networks.     

Information technology infusion model for health sector in a developing country: Nigeria as a case.

To date, information technology (IT) has not been widely adopted in the health sector in the developing countries. Information Technology may bring an improvement on health care delivery systems. It is one of the prime movers of globalization. Information technology infusion is the degree to which a different information technology tools are integrated into organizational activities. This study aimed to know the degree and the extent of incorporation of Information Technology in the Nigerian health sector and derive an IT infusion models for popular IT indicators that are in use in Nigeria (Personal computers, Mobile phones, and the Internet) and subsequently investigates their impacts on the health care delivery system in Nigerian teaching hospitals. In this study, data were collected through the use of questionnaires. Also, oral interviews were conducted and subsequently, the data gathered were analyzed. The results of the analysis revealed that out of the three IT indicators considered, mobile phones are spreading fastest. It also revealed that computers and mobile phones are in use in all the teaching hospitals. Finally in this research, IT infusion models were developed for health sector in Nigeria from the data gathered through the questionnaire and oral interview.     

Development of a cognitive framework of patient record summary review in the formative phase of user-centered design

Excellent usability characteristics allow electronic health record (EHR) systems to more effectively support clinicians providing care and contribute to better quality and safety. The Office of the National Coordinator for Health IT (ONC) therefore requires all vendors to follow a User-Centered Design (UCD) process to increase the usability of their products in order to meet certification criteria for the Safety-Enhanced Design part of the Meaningful Use (stage 2) EHR incentive program. This report describes the initial stage of a UCD process in which foundational design concepts were formulated. We designed a functional prototype of an EHR module intended to help clinicians to efficiently complete a summary review of an electronic patient record before an ambulatory visit. Cognitively-based studies were performed and the results used to develop a cognitive framework that subsequently guided design of a prototype. Results showed that clinicians categorized and reasoned with patient data in distinct patterns; they preferred to review relevant history in the assessment and plan section of the most recent note, to search for changes in health and for new episodes of care since the last visit and to look up current-day data such as vital signs. These basic concepts were represented in the design, for instance, by screen division into vertical thirds that had historical content to the left and most recent data to the right. Other characteristics such as visual association of contextual information or direct, one-click access to the assessment and plan section of visit notes were directly informed by our findings and refined in a series of UCD-specific iterative testing. Understanding of tasks and cognitive demands early in the UCD process was critically important for developing a tool optimized for reasoning and workflow preferences of clinicians.