Consumer Health Information Technology Research Articles

CATALYZING DEMENTIA CARE THROUGH THE LEARNING HEALTH SYSTEM AND CONSUMER HEALTH INFORMATION TECHNOLOGY

Abstract To advance care for persons with Alzheimer’s disease and related dementias (ADRD), real-world health system effectiveness research must actively engage those affected to understand what works, for whom, in what setting, and for how long – an agenda central to Learning Health System principles. The spread of consumer health information technology affords new opportunities to support ADRD caregivers within health care delivery. Patient portals allow patients to view test results and sections of their electronic medical record, perform health management tasks (e.g., scheduling visits, billing, filling prescriptions), access educational materials, and communicate with clinicians using secure messaging. Many care delivery organizations allow patients to share access to their portal account by registering a “care partner” to have their own identity credentials (login/password). Through shared access, patients may select whether and who electronically interacts with clinicians on their behalf, thus, respecting patient preferences while supporting care partners with timely information about patient health and treatments, and a mechanism to electronically navigate health system demands. Little is now known about electronic information sharing preferences and practices of persons with ADRD and their caregivers, the feasibility of deploying novel interventions, or existing initiatives through consumer health information technologies to better support ADRD care and management. This symposium presents early results from projects seeking to increase evidence regarding the role and use of consumer health information technology in ADRD care and management by examining the existing landscape of patient portal use in the context of dementia care from a large integrated academic health system.

Facilitators of and barriers to the use of a computer-based self-monitoring system by type 2 diabetic and/or hypertensive patients

BackgroundConsumer health information technologies (IT) are being increasingly applied to improve access to self-care resources for individuals with chronic illnesses. Thus, it is important to identify the factors influencing the patients’ adoption or rejection of these technologies. ObjectiveThis study contributes to the literature on consumer health IT adoption by identifying the facilitators and barriers to the use of a computer-based chronic disease self-monitoring system by patients with type 2 diabetes mellitus and/or hypertension. MethodsSemi-structured interviews nested within a 3-month randomized controlled trial were conducted with 38 patients. Guided by the home care health IT implementation framework described in Or et al. (2009), their data were contented analyzed. ResultsThe facilitators and barriers identified were organized around the six variable categories of the Health IT implementation framework, including patient attributes, technological characteristics, patient–technology interaction, home environment, organizational factors (e.g., influences, resources, and support), and patient outcomes. ConclusionsOur study provides a holistic insight into the conceptualization of consumer health IT adoption by patients. When creating and implementing consumer health IT, taking into account the identified facilitators and barriers might boost the likelihood of technology adoption.

Catalyzing dementia care through the learning health system and consumer health information technology.

To advance care for persons with Alzheimer's disease and related dementias (ADRD), real-world health system effectiveness research must actively engage those affected to understand what works, for whom, in what setting, and for how long-an agenda central to learning health system (LHS) principles. This perspective discusses how emerging payment models, quality improvement initiatives, and population health strategies present opportunities to embed best practice principles of ADRD care within the LHS. We discuss how stakeholder engagement in an ADRD LHS when embedding, adapting, and refining prototypes can ensure that products are viable when implemented. Finally, we highlight the promise of consumer-oriented health information technologies in supporting persons living with ADRD and their care partners and delivering embedded ADRD interventions at scale. We aim to stimulate progress toward sustainable infrastructure paired with person- and family-facing innovations that catalyze broader transformation of ADRD care.

Exploring the Discursive Emphasis on Patients and Coaches Who Participated in Technology-Assisted Diabetes Self-management Education: Clinical Implementation Study of Health360x

BackgroundA critical unmet need for underserved patients with diabetes is regular access to sufficient support for diabetes self-management. Although advances in digital technologies have made way for eHealth applications that provide a scalable path for tailored interventions for self-management of chronic conditions, health and digital literacy has remained an obstacle to leveraging these technologies for effective diabetes self-management education. Studies have shown that the availability of coaches helps to maintain engagement in internet-based studies and improves self-efficacy for behavior change. However, little is known about the substances involved in these interactions.ObjectiveThis study aims to compare the content of conversations between patient–coach pairs that achieved their self-management goals and those that did not. The context is a clinical implementation study of diabetes self-management behavior change using Health360x within the practices of the Morehouse Choice Accountable Care Organization in the Atlanta metro area. Health360x is a coach-assisted consumer health information technology designed to support self-management skills acquisition and behavior among underserved, high-risk patients with diabetes.MethodsWe provide a novel analysis of the discursive emphasis on patients and coaches. We examined transcripts of visits using a structural topic model to estimate topic content and prevalence as a function of patient and coach characteristics. We compared topics between patient–coach pairs that achieved diabetes-related self-management goals and those who did not. We also estimated a regression in which utterances are the units, the dependent variable is the proportion of an utterance that is about a given topic, and the independent variables are speaker types and explored other themes.ResultsTranscripts from 50 patients who were recruited and consented, starting in February 2015, were analyzed. A total of 44 topics were estimated for patient–coach pairs that achieved their intended health goals and 50 topics for those who did not. Analysis of the structural topic model results indicated that coaches in patient–coach pairs that were able to achieve self-management goals provided more contextual feedback and probed into patients’ experience with technology and trust in consumer information technologies. We also found that discussions around problem areas and stress, support (βCoach=.015; P<.001), initial visits (βCoach=.02; P<.001), problems with technology (βCoach=.01; P<.001), health eating goals (βCoach=.01; P=.04), diabetes knowledge (βCoach=.02; P<.001), managing blood sugar (βCoach=.03; P<.001), and using Health360x (βCoach=.003; P=.03) were dominated by coaches.ConclusionsCoach-facilitated, technology-based diabetes self-management education can help underserved patients with diabetes. Our use of topic modeling in this application sheds light on the actual dynamics in conversations between patients and coaches. Knowledge of the key elements for successful coach–patient interactions based on the analysis of transcripts could be applied to understanding everyday patient–provider encounters, given the recent paradigm shift around the use of telehealth.

Designing Consumer Health Information Technology to Support Biform and Articulation Work: A Qualitative Study of Diet and Nutrition Management as Patient Work.

BackgroundDiet and nutrition management is an integral component of Crohn disease (CD) management. This type of management is highly variable and individualized and, thus, requires personalized approaches. Consumer health information technology (CHIT) designed to support CD management has typically supported this task as everyday life work and, not necessarily, as illness work. Moreover, CHIT has rarely supported the ways in which diet and nutrition management requires coordination between multiple forms of patient work.ObjectiveThe purpose of this study was to investigate diet and nutrition management as biform work, identify components of articulation work, and provide guidance on how to design CHIT to support this work.MethodsWe performed a qualitative study in which we recruited participants from CD-related Facebook pages and groups.ResultsSemistructured interviews with 21 individuals showed that diet and nutrition management strategies were highly individualized and variable. Four themes emerged from the data, emphasizing the interactions of diet and nutrition with physical, emotional, information, and technology-enabled management.ConclusionsThis study shows that the extent to which diet and nutrition management is biform work fluctuates over time and that articulation work can be continuous and unplanned. The design guidance specifies the need for patient-facing technologies to support interactions among diet and nutrition and other management activities such as medication intake, stress reduction, and information seeking, as well as to respond to the ways in which diet and nutrition management needs change over time.

Remote Monitoring of Patients with Heart Failure: An Overview of Systematic Reviews

Importance: Congestive heart failure is a major public health problem with significant human and economic cost to the healthcare system. Using remote patient monitoring devices, we can improve healthcare outcomes in patients with this condition. Objective: To evaluate the efficacy and compare Remote Patient Monitoring (RPM) devices and techniques in improving healthcare outcomes in patients with congestive heart failure. Evidence: Review An organized and thorough systematic search was performed using the 4 major electronic databases PubMed, Cochrane Library, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and EMBASE (Excerpta Medica dataBASE) from January 1st, 2016 to December 31st, 2020. MeSH (Medical Subject Headings) terms along with key words telemedicine, heart failure, and systematic reviews were used to search PubMed for all relevant studies to identify systematic reviews and meta-analysis published that evaluated the efficacy of Telemedicine interventions in heart failure patients. Similar searches were made on other 3 databases based on similar terms per their individual user guide recommendations. Reviews were selected and strength of evidence analyzed by using the Assessment of Multiple Systematic Reviews 2 (AMSTAR 2) tool. Studies were evaluated on common denominators of interventions and outcomes using standard terms. Findings: 403 reports were identified in total out of which 22 systematic reviews of randomized clinical trials and meta-analysis were identified. Variation in quality of methodologies were found with 8 reviews having AMSTAR 2 ratings of high quality. Home Tele-monitoring and Telemedicine reduced all-cause mortality rates, HF-related mortality, all-cause hospitalization and Heart Failure(HF)-related hospitalization rates. Telemedicine was associated with a small significant increase in overall quality of life. Mobile health technologies, Consumer health information technologies and invasive remote devices have shown no conclusive evidence due to limited studies. Conclusions and Relevance: This overview demonstrates high-quality evidence to support that Telemedicine has shown improvement in outcomes for patients with heart failure. Home tele-monitoring is also effective in improving outcomes but good quality evidence is lacking suggesting a need for more high quality studies and reviews.

Personal health information management among healthy older adults: Varying needs and approaches.

With age, older adults experience a greater number of chronic diseases and medical visits, and an increased need to manage their health information. Technological advances in consumer health information technologies (HITs) help patients gather, track, and organize their health information within and outside of clinical settings. However, HITs have not focused on the needs of older adults and their caregivers. The goal of the SOARING (Studying Older Adults and Researching their Information Needs and Goals) Project was to understand older adult personal health information management (PHIM) needs and practices to inform the design of HITs that support older adults. Drawing on the Work System Model, we took an ecological approach to investigate PHIM needs and practices of older adults in different residential settings. We conducted in-depth interviews and surveys with adults 60 years of age and older. We performed on-site in-person interview sessions with 88 generally healthy older adults in various settings including independent housing, retirement communities, assisted living, and homelessness. Our analysis revealed 5 key PHIM activities that older adults engage in: seeking, tracking, organizing, sharing health information, and emergency planning. We identified 3 major themes influencing older adults' practice of PHIM: (1) older adults are most concerned with maintaining health and preventing illness, (2) older adults frequently involve others in PHIM activities, and (3) older adults' approach to PHIM is situational and context-dependent. Older adults' approaches to PHIM are dynamic and sensitive to changes in health, social networks, personal habits, motivations, and goals. PHIM tools that meet the needs of older adults should accommodate the dynamic nature of aging and variations in individual, organizational, and social contexts.

A Sociotechnical Systems Approach Toward Tailored Design for Personal Health Information Management.

We used a sociotechnical systems approach-which conceptualizes a system of interacting people, technologies, and tasks, to identify individual differences in personal health information management (PHIM) that can inform the design for patient-friendly environments, tools and technologies. We conducted a secondary thematic analysis of data collected as part of a parent project, vizHOME. The goal of vizHOME was to improve health and health outcomes through identifying key features in the environment that will inform the design of consumer health information technology HIT. We analyzed interview data collected from 20 individuals with diabetes. We found seven dimensions of PHIM: (1) level of privacy preferred for PHIM; (2) amount of engagement in PHIM; (3) extent of guidance preferred for PHIM; (4) level of documentation preferred for PHIM; (5) degree of physical distribution of PHIM; (6) amount of flexibility in PHIM routine; and (7) use of external cues to manage PHIM. Our results suggest that each dimension exists as a continuum, which are anchored from low to high. Exploring the interaction between PHIM and the sociotechnical system in which PHIM is performed revealed key dimensions of PHIM as well as individual differences in those PHIM dimensions. Identification of individual differences in PHIM can support the creation of human-centered design considerations for tailored environments, products, processes, and technologies that support PHIM. Future research will seek to validate PHIM dimensions in a larger population and develop a PHIM-typing measure to identify PHIM types toward tailoring processes, products, and to individual needs in context.

Understanding the evolving preferences for use of health information technology among adults with self reported anxiety and depression in the U.S

Abstract Recent evidence suggests consumer health information technologies are increasingly utilized among those with medical conditions towards improving health and recovery. However, there is also increasing evidence that many patients, especially those with mental health conditions like depression and anxiety, may struggle to utilize these apps given issues with usability and engagement. Further, there is a paucity of literature on differences in the preference for using technologies such as smartphone apps for mental health patients compared to other patient populations. The purpose of this study is to evaluate the preferences and use of technology for health information exchange within a nationally-representative sample of adults with and without mental illness and to assess whether these preferences differ according to sociodemographic factors. For our analysis, we utilized data from the 2017 (HINTS 5 cycle 1) and 2018 (HINTS 5 cycle 2) iterations of the Health Information National Trends Survey (n = 6789). We used multivariate logistic regression to identify factors associated with a higher or lower rate of using health information technology (HIT) in persons with or without mental illness. We adjusted these models for the sociodemographic variables of age, sex, household income, education level, employment status, health insurance status, marital status, and race. Of the 6789 participants, 1538 reported having depression and/or an anxiety disorder. In both the adjusted and unadjusted models, ownership of smartphones, tablet computers, health apps, and utilization of the internet did not differ by depression or anxiety status. Furthermore, in the adjusted models, those with depression and/or anxiety had a significantly higher likelihood of using electronic means such as computers and smartphones to search for health information, look up test results, communicate with a physician, and to share health information. However, these individuals were also more likely to withhold information from their health care providers due to concerns about the security or privacy of their medical records. Our analysis shows that while ownership rates for smartphones and the use of health apps did not differ by mental health status, there was an increased likelihood of those with mental illness to use health information tools in communicating with their health providers. However, concerns about data security and privacy may hinder the utilization and integration of these technologies in mental health care. Future efforts should focus on ensuring patient privacy and data protection to maximize the benefits of digital technology in mentally ill populations.

The Florida Mobile Health Adherence Project for People Living With HIV (FL-mAPP): Longitudinal Assessment of Feasibility, Acceptability, and Clinical Outcomes.

BackgroundFor people living with HIV (PLWH), antiretroviral therapy (ART) adherence is crucial to attain better health outcomes. Although research has leveraged consumer health information technologies to enhance ART adherence, no study has evaluated feasibility and clinical outcomes associated with the usage of a commercially available, regularly updated mobile health (mHealth) app for improving ART adherence among PLWH.ObjectiveThis study aimed to assess the feasibility, acceptability, and clinical outcomes of Care4Today, an existing, free, biprogrammatic mHealth app for improving ART adherence among PLWH.MethodsThe Florida mHealth Application Adherence Project (FL-mAPP) was a 90-day longitudinal pilot study conducted in 3 public HIV clinics in Florida, United States. After obtaining informed consent, 132 participants completed a survey and then were given the option to try an existing mHealth app to help with ART adherence. Of these, 33.3% (44/132) declined, 31.1% (41/132) agreed but never used the app, and 35.6% (47/132) used the app. All were asked to complete follow-up surveys at 30 days and 90 days after enrollment. Usage data were used to assess feasibility. Clinical outcomes of self-reported ART adherence and chart-obtained HIV viral load and CD4+ T-cell counts were compared among those who used the platform (users) versus those who did not (nonusers). Participants and HIV care providers also provided responses to open-ended questions about what they liked and did not like about the app; comments were analyzed using thematic analysis.ResultsOf 132 participants, 47 (35.6%) and 85 (64.4%) were categorized as users and nonusers, respectively. Among users, a Kaplan-Meier plot showed that 25 persons (53%) continued using the app after the 90-day follow-up. At 30-day follow-up, 13 (81.3%) of those who used the mHealth app reported ≥95% ART adherence, compared with 17 (58.6%) nonusers (P=.12). Overall, 39 (82%) users liked or somewhat liked using the platform. Participants’ favorite features were medication reminders, ability to create custom reminders, and adherence reports.ConclusionsThis longitudinal study found that a commercially available medication adherence mHealth app was a feasible and acceptable intervention to improve ART adherence among PLWH and engaged in clinical care across 3 public HIV clinics in the state of Florida. Overall, participants liked the Care4Today app and thought the medication reminders were their favorite feature. Generally, self-reports of ART adherence were better among users than nonusers, both at 30- and 90-day follow-ups. Further clinical research needs to address user fatigue for improving app usage.

Recent trends in diabetes-related consumer health information technology research.

Diabetes-related consumer health information technology (CHIT) has been designed to facilitate self-management practices, and its use has improved health outcomes for many consumers. This analysis sought to identify tendencies in diabetes-related CHIT research from 2010-2015 to help researchers find novel research topics, periodicals, collaborators, and funding agencies and experts and lay consumers to find scholarly information. Six search engines encompassing computer science, engineering, and medicine yielded potential diabetes-related CHIT publications. Abstracts and full texts were screened based on inclusion and exclusion criteria. Information on year, periodical, periodical domain, keywords, author location, author institutions, authors, and funding agencies were collected from included publications. The screening process yielded 1551 publications. Studies were published in a core of twenty periodicals, commonly comprising medicine or technology domains. "Telemedicine" was the most frequently used keyword. Harvard University, Dr. Eirik Årsand, and the National Institute of Diabetes and Digestive Kidney Diseases were the most frequent author institution, author, and funding agency, respectively, associated with publications. This analysis revealed potential for novel research on the sociology and economics of diabetes-related CHIT, among other topics. A lack of collaboration between top authors in the field indicates potential for new, impactful collaborations. Ongoing bibliometric research will be necessary to assess changes in this field. The opportunity exists to inform lay consumers and researchers through bibliometric analyses of other consumer health informatics topics.

Achieving Health Equity with e-Healthystrides©: Patient Perspectives of a Consumer Health Information Technology Application.

We describe the implementation, clinical outcomes and participant perspectives for e-Healthystrides©. Three independent ambulatory clinics and an historic African American (AA) church. Adults with diagnosed diabetes mellitus type 2. e-Healthystrides© health coach facilitated intervention. Acquisition of three new self-management behaviors. Blood pressure, blood glucose, A1c, attrition rate and participant perspectives of e-Healthystrides©. A convergent parallel mixed method design was used in both pilot studies. Two hundred and sixty-four participants, aged ~62±16 years, enrolled. Attrition at 52 weeks varied 50%-90% by site. Low engagement users were defined mainly by anxiety with putting health information online. The primary outcome was achieved in 36% of our participants, with the top 3 self-management behaviors acquired being: reducing risk (24.5%); healthy eating (23.7%); and monitoring (16.4%). Problem solving had the lowest rate of achievement (.91%). Blood pressure improved significantly at all sites at 12 weeks and at clinics A,B,C at 52 weeks. Blood glucose improved at 12 weeks: clinic A (P=.0001), B (P=.003), C (P=.001) and D (P=.03); but, at 52 weeks, only clinics A (P=<.0001) and B (P=.0001). Participants felt empowered by features of e-Healthystrides©. Engagement with health coaches and peers was highly valued. e-Healthystrides© is effective for self-management behavior change. Participants showed the best success with healthy coping, healthy eating, and monitoring behaviors. They felt empowered by access to health information and valued interaction with coaches and peers. Our findings support strong relational/social network strategy with a role for coaches as guides (apomediaries) who facilitate skill acquisition using technology.

Consumer Health Information Technology in the Prevention of Substance Abuse: Scoping Review.

BackgroundAddiction is one of the most rapidly growing epidemics that currently plagues nations around the world. In the United States, it has cost the government more than US $700 billion a year in terms of health care and other associated costs and is also associated with serious social, physical, and mental consequences. Increasing efforts have been made to tackle this issue at different levels, from primary prevention to rehabilitation across the globe. With the use of digital technology rapidly increasing, an effort to leverage the consumer health information technologies (CHITs) to combat the rising substance abuse epidemic has been underway. CHITs are identified as patient-focused technological platforms aimed to improve patient engagement in health care and aid them in navigating the complex health care system.ObjectiveThis review aimed to provide a holistic and overarching view of the breadth of research on primary prevention of substance abuse using CHIT conducted over nearly past five decades. It also aimed to map out the changing landscape of CHIT over this period.MethodsWe conducted a scoping review using the Arksey and O’Malley’s modified methodological framework. We searched 4 electronic databases (PubMed, Cochrane, Scopus, and EMBASE). Papers were included if the studies addressed the use of CHIT for primary prevention of substance abuse and were published in English between 1809 and 2018. Studies that did not focus solely on primary prevention or assessed additional comorbid conditions were eliminated.ResultsForty-two papers that met our inclusion criteria were included in the review. These studies were published between 1970 and 2018 and were not restricted by geography, age, race, or sex. The review mapped studies using the most commonly used CHIT platforms for substance abuse prevention from mass media in the 1970s to mobile and social media in 2018. Moreover, 191 studies that were exclusively focused on alcohol prevention were excluded and will be addressed in a separate paper. The studies included had diverse research designs although the majority were randomized controlled trials (RCT) or review papers. Many of the RCTs used interventions based on different behavioral theories such as family interactions, social cognitive theories, and harm-minimization framework.ConclusionsThis review found CHIT platforms to be efficacious and cost-effective in the real-world settings. We also observed a gradual shift in the types and use of CHIT platforms over the past few decades and mapped out their progression. In addition, the review detected a shift in consumer preferences and behaviors from face-to-face interactions to technology-based platforms. However, the studies included in this review only focused on the aspect of primary prevention. Future reviews could assess the effectiveness of platforms for secondary prevention and for prevention of substance abuse among comorbid populations.

Hispanic Dementia Family Caregiver's Knowledge, Experience, and Awareness of Self-Management: Foundations for Health Information Technology Interventions.

As a first step toward developing a web-based Family-Health Information Management System intervention, we explored Hispanic dementia family caregiver's knowledge, use, and awareness of self-management principles and skills to address health and health care needs for themselves and the person with dementia (PWD). Twenty caregivers and 11 caregiver counselors attended an English or Spanish language focus group ranging from 4 to 6 participants. We conducted a directed content analysis informed by Lorig and Holman's conceptualization of self-management. A complement of six skills (i.e., problem solving, decision making, resource utilization, patient-provider partnership, action planning, and self-tailoring) to achieve one of three tasks (i.e., emotional, medical, and role management) can fully represent Hispanic dementia family caregivers' ability to self-manage health and health care needs. While not prominent in our study, caregivers and caregiver counselors pointed out existing and potential uses of personal consumer technology to schedule reminders and search for resources. A broad conceptualization of self-management may be necessary to understand Hispanic dementia family caregiver's ability and needs to address emotional, medical, and role challenges of caregiving. These findings and advances in the use of consumer health information technology support the development of self-management caregiver interventions.

Characterization of Patient Interest in Provider-Based Consumer Health Information Technology: Survey Study.

BackgroundConsumer health information technology can improve patient engagement in their health care and assist in navigating the complexities of health care delivery. However, the consumer health information technology offerings of health systems are often driven by provider rather than patient perspectives and inadequately address patient needs, thus limiting their adoption by patients. Consideration given to patients as stakeholders in the development of such technologies may improve adoption, efficacy, and consumer health information technology resource allocation.ObjectiveThe aims of this paper were to measure patient interest in different health system consumer health information technology apps and determine the influence of patient characteristics on consumer health information technology interest.MethodsPatients seen at the Cleveland Clinic Neurological Institute were electronically surveyed on their interest in using different consumer health information technology apps. A self-efficacy scale, Patient Health Questionnaire-9 depression screen, and EuroQol 5 dimensions health-related quality of life scale were also completed by patients. Logistic regression was used to determine the influence of patient characteristics on interest in consumer health information technology in the categories of self-management, education, and communication.ResultsThe majority of 3852 patient respondents had an interest in all technology categories assessed in the survey. The highest interest was in apps that allow patients to ask questions of providers (3476/3852, 90.24%) and to schedule appointments (3211/3839, 83.64%). Patient interest in consumer health information technology was significantly associated with greater depression symptoms, worse quality of life, greater health self-efficacy, and smartphone ownership (P<.001 for all listed).ConclusionsPatients should be viewed as active stakeholders in consumer health information technology development and their perspectives should consistently guide development efforts. Health systems should consider focusing on consumer health information technologies that assist patients in scheduling appointments and asking questions of providers. Patients with depression should also be considered for targeted consumer health information technology implementation. Health self-efficacy is a valid predictor of consumer health information technology interest and may play a role in the utilization of consumer health information technologies. Health systems, broadly, should put forth greater effort to understand the needs and interests of patients in the consumer health information technology development process. Consumer health information technology design and implementation may be improved by understanding which technologies patients want.

An Evaluation of Overcoming Barriers to Engage Consumers in the Use of Health Care Information Technology

ABSTRACTThe purpose of this review is to determine why consumers may not be adopting or engaging in the use of health information technology to successfully improve or maintain their health status. A literature search was completed to find articles related to consumer engagement in the use of health information technology. The literature found was then categorized based on a patient engagement framework defined by the National eHealth Collaborative. The barriers to engagement, issues with types of technology, and problems in study methodology were then synthesized for understanding consumer engagement. The results of the review showed the major barriers related to engaging consumers in the use of health information technology, including privacy, education, cost, literacy, accuracy of information, trust, meeting consumer needs, measures, integration, and policy. The most prevalent of these issues is that health information technology is often not designed with accurate and detailed user requirements in mind. Issues of the methodologies used to show how consumer health information technology is consumed relate to studies that are not aligned with the original purpose of the experiment. Additional work and research is needed to ensure that the design of consumer health information technology meets the consumer’s needs. Improved designs and methods of achieving these designs will create technology that consumers find appealing to use in order to better manage their health. If consumers find value in the technology, they will be more likely to engage and adopt it for additional use.

Using scenarios and personas to enhance the effectiveness of heuristic usability evaluations for older adults and their care team

ObjectiveUsing heuristics to evaluate user experience is a common methodology for human-computer interaction studies. One challenge of this method is the inability to tailor results towards specific end-user needs. This manuscript reports on a method that uses validated scenarios and personas of older adults and care team members to enhance heuristics evaluations of the usability of commercially available personal health records for homebound older adults. Materials and MethodsOur work extends the Chisnell and Redish heuristic evaluation methodology by using a protocol that relies on multiple expert reviews of each system. It further standardizes the heuristic evaluation process through the incorporation of task-based scenarios. ResultsWe were able to use the modified version of the Chisnell and Redish heuristic evaluation methodology to identify potential usability challenges of two commercially available personal health record systems. This allowed us to: (1) identify potential usability challenges for specific types of users, (2) describe improvements that would be valuable to all end-users of the system, and (3) better understand how the interactions of different users may vary within a single personal health record. ConclusionsThe methodology described in this paper may help designers of consumer health information technology tools, such as personal health records, understand the needs of diverse end-user populations. Such methods may be particularly helpful when designing systems for populations that are difficult to recruit for end-user evaluations through traditional methods.

From loquacious to reticent: understanding patient health information communication to guide consumer health IT design.

It is increasingly recognized that some patients self-manage in the context of social networks rather than alone. Consumer health information technology (IT) designed to support socially embedded self-management must be responsive to patients' everyday communication practices. There is an opportunity to improve consumer health IT design by explicating how patients currently leverage social media to support health information communication. The objective of this study was to determine types of health information communication patterns that typify Facebook users with chronic health conditions to guide consumer health IT design. Seven hundred participants with type 2 diabetes were recruited through a commercial survey access panel. Cluster analysis was used to identify distinct approaches to health information communication both on and off Facebook. Analysis of variance (ANOVA) methods were used to identify demographic and behavioral differences among profiles. Secondary analysis of qualitative interviews ( n = 25) and analysis of open-ended survey questions were conducted to understand participant rationales for each profile. Our analysis yielded 7 distinct health information communication profiles. Five of 7 profiles had consistent patterns both on and off Facebook, while the remaining 2 demonstrated distinct practices, with no health information communication on Facebook but some off Facebook. One profile was distinct from all others in both health information communication practices and demographic composition. Rationales for following specific health information communication practices were categorized under 6 themes: altruism, instrumental support, social support, privacy and stigma, convenience, and Facebook knowledge. Facebook has been widely adopted for health information communication; This study demonstrates that Facebook has been widely adopted for health information communication. It also shows that the ways in which patients communicate health information on and off Facebook are diverse.

Embracing Complexity: Rethinking Culturally Informed Design in Human Factors/Ergonomics and Consumer Health Informatics

ABSTRACTA basic premise of macroergonomic theory is that better physical and psychological outcomes and reduced unintended consequences are achieved when there is alignment between a technology and the user’s work system. The user’s work system is defined as the social subsystem, technical subsystem, and the external environment within which work is performed. Cultural context has been conceptualized as part of the external environment. Thus, from a theoretical viewpoint, creating technology that is aligned with users’ cultural contexts will result in better performance outcomes. The need to align with cultural context is particularly important for technologies such as consumer health information technology, which are intended for use within the naturalistic spaces of patients’ homes and communities. Traditional means of accounting for cultural context in the human factors and consumer health informatics literatures are narrow and unlikely to capture the potential richness and complexity of patients’ cultural contexts. The case study presented here sought to understand cultural context from a patient perspective. Eighteen patients with type 2 diabetes were engaged in a series of interviews about their health information communication practices, their cultural contexts, and the relationships between these. Participants identified a wide range of cultural identities comprising their cultural contexts, including race, ethnicity, nationality, experience, religion, and socioeconomic status. They also identified multiple ways in which cultural identity may be operationalized; qualitative content analysis was used to group these into three main themes: experience (ways in which culture is learned), manifestation (ways in which culture is exhibited), structure (ways in which culture is a social organization or system). Across participants, each of these operationalizations was perceived as influencing health information communication practices. Consequently, the findings suggest that the fields of human factors and consumer health informatics must reconceptualize users’ cultural contexts as encompassing a wider range of identities and as neither constant nor stable. Rather, cultural contexts are situation dependent, are subject to interpretation, and vary across individuals. Such a conclusion implies that existing approaches of aligning specific technologies with specific cultural identities may no longer be appropriate nor scalable. Instead, a more feasible alternative may be to meet the needs of individuals embedded in multiple cultural contexts simultaneously while also enabling users to self-select salient attributes of the technology.

Human Factors Analysis, Design, and Evaluation of Engage, a Consumer Health IT Application for Geriatric Heart Failure Self-Care

ABSTRACTHuman factors and ergonomics (HFE) and related approaches can be used to enhance research and development of consumer-facing health information technology (IT) systems, including technologies supporting the needs of people with chronic disease. A multiphase HFE study of health IT supporting self-care of chronic heart failure by older adults is described. The study was based on HFE frameworks of “patient work” and incorporated the three broad phases of user-centered design: study or analysis, design, and evaluation. In the study phase, data from observations, interviews, surveys, and other methods were analyzed to identify gaps in and requirements for supporting heart failure self-care. The design phase applied findings from the study phase throughout an iterative process, culminating in the design of the Engage application, a product intended for continuous use over 30 days to stimulate self-care engagement, behavior, and knowledge. During the evaluation phase, a variety of usability issues through expert heuristic evaluation and laboratory-based usability testing were identified. The implications of our findings regarding heart failure self-care in older adults and the methodological challenges of rapid translational field research and development in this domain are discussed.