Ethical Imperatives for Working With Diverse Populations in Digital Research.

Digital research methodologies are driving a revolution in health technology but do not yet fully engage diverse and historically underrepresented populations. In this paper, we explore the ethical imperative for such engagement alongside accompanying challenges related to recruitment, appreciation of risk, and confidentiality, among others. We critically analyze existing research ethics frameworks and find that their reliance on individualistic and autonomy-focused models of research ethics does not offer adequate protection in the context of the diversity imperative. To meet the requirements of justice and inclusivity in digital research, methods will benefit from a reorientation toward more participatory practices.

Approaches to understanding the impact of technologies for aging in place: a mini-review.

BACKGROUND: There are many approaches to evaluating aging-in-place technologies. While there are standard measures for outcomes such as health and caregiver burden, which lend themselves to statistical analysis, researchers have a harder time identifying why a particular information and communication technology (ICT) intervention worked (or not). OBJECTIVE: The purpose of this paper is to review a variety of methods that can help answer these deeper questions of when people will utilize an ICT for aging in place, how they use it, and most importantly why. This review is sensitive to the special context of aging in place, which necessitates an evaluation that can explore the nuances of the experiences of older adults and their caregivers with the technology in order to fully understand the potential impact of ICTs to support aging in place. METHODS: The authors searched both health (PubMed) and technology (ACM Digital Library) venues, reviewing 115 relevant papers that had an emphasis on understanding the use of aging-in-place technologies. This mini-review highlights a number of popular methods used in both the health and technology fields, including qualitative methods (e.g. interviews, focus groups, contextual observations, diaries, and cultural probes) and quantitative methods (e.g. surveys, the experience sampling method, and technology logs). RESULTS: This review highlights that a single evaluation method often is not adequate for understanding why people adopt ICTs for aging in place. The review ends with two examples of multifaceted evaluations attempting to get at these deeper issues. CONCLUSION: There is no proscriptive formula for evaluating the intricate nuances of technology acceptance and use in the aging-in-place context. Researchers should carefully examine a wide range of evaluation techniques to select those that will provide the richest insights for their particular project.

Making sense of mobile- and web-based wellness information technology: cross-generational study.

BACKGROUND: A recent trend in personal health and wellness management is the development of computerized applications or information and communication technologies (ICTs) that support behavioral change, aid the management of chronic conditions, or help an individual manage their wellness and engage in a healthier lifestyle. OBJECTIVE: To understand how individuals across 3 generations (young, middle-aged, and older) think about the design and use of collaborative health and wellness management technologies and what roles these could take in their lives. METHODS: Face-to-face semistructured interviews, paper prototype systems, and video skits were used to assess how individuals from 3 age cohorts (young: 18-25 years; middle-aged: 35-50 years; and older: ≥65 years) conceptualize the role that health and wellness computing could take in their lives. RESULTS: A total of 21 participants in the 3 age cohorts took part (young: n=7; middle-aged: n=7; and older: n=7). Young adults expected to be able to actively manage the presentation of their health-related information. Middle-aged adults had more nuanced expectations that reflect their engagement with work and other life activities. Older adults questioned the sharing of health information with a larger audience, although they saw the value in 1-way sharing between family members or providing aggregated information. CONCLUSIONS: Our findings inform our suggestions for improving the design of future collaborative health and wellness applications that target specific age groups. We recommend that collaborative ICT health applications targeting young adults should integrate with existing social networking sites, whereas those targeting middle-aged and older adults should support small social networks that rely on intimate personal relationships. Systems that target middle-aged adults should support episodic needs, such as time-sensitive, perhaps intermittent, goal setting. They should also have a low barrier to entry, allowing individuals who do not normally engage with the Internet to participate with the application for the specific purposes of health engagement. Collaborative ICT health applications targeting older adults should allow discreet 1-way sharing, and also support sharing of information in aggregate with others' data. These systems should also provide mechanisms to preselect recipients of different kinds of data, or to easily direct specific information to individuals in real time.

Using a mobile application to self-monitor diet and fluid intake among adults receiving hemodialysis.

Hemodialysis patients have difficulty self-managing a complex dietary and fluid regimen. The purpose of this feasibility study was to pilot test an electronic self-monitoring intervention based on social cognitive theory. During a 6-week intervention, 24 participants self-monitored diet and fluid intake using the Dietary Intake Monitoring Application (DIMA), and 20 participants served as controls by monitoring their activity using the Daily Activity Monitor Application (DAMA). Results from this pilot study suggest the intervention is feasible and acceptable, although few significant effects on outcomes were found in this small sample. The DIMA has potential to facilitate dietary and fluid self-monitoring but requires additional refinement and further testing.

Evaluation framework for selecting wearable activity monitors for research.

BACKGROUND: Wearable devices that support activity tracking and other measurements hold great potential to increase awareness of health behaviors and support the management of chronic health conditions. There is a scarcity of guidance for researchers of all disciplines when planning new studies to evaluate and select technologies appropriate for study purpose, population, and overall context. The aim of this study was to develop and test an evaluation framework to rapidly and systematically evaluate and select consumer-grade wearable devices that serve individual study needs in preparation for evaluations with target populations. METHODS: The wearable evaluation framework was defined based on published literature and past research experiences of the research team. We tested the framework with example case studies to select devices for two different research projects focused on aging-in-place and gestational diabetes. We show how knowledge of target population and research goals help prioritize application of the criteria to inform device selection and how project requirements inform sequence of criteria application. RESULTS: The framework for wearable device evaluation includes 27 distinct evaluation criteria: 12 for everyday use by users, 6 on device functionality, and 9 on infrastructure for developing the research infrastructure required to obtain the data. We evaluated 10 devices from four vendors. After prioritizing the framework criteria based on the two example case studies, we selected the Withings Steele HR, Garmin Vivosmart HR+ and Garmin Forerunner 35 for further evaluation through user studies with the target populations. CONCLUSIONS: The aim of this paper was to develop and test a framework for researchers to rapidly evaluate suitability of consumer grade wearable devices for specific research projects. The use of this evaluation framework is not intended to identify a definitive single best device, but to systematically narrow the field of potential device candidates for testing with target study populations. Future work will include application of the framework within different research projects for further refinement.

Can I Take a Break? Facilitating In-Home Respite Care for Family Caregivers of Older Adults.

Respite care can provide a chance for family caregivers to take a temporary and flexible break from their long-term caregiving work. Despite its beneficial aspects and value, there is little research on how technology might mitigate barriers to using respite care. The purpose of this paper is to understand the current practices and challenges that people face within the ecosystem of respite care work in the context of in-home care. Based on an in-depth interview study of 18 primary family caregivers, respite family caregivers, and respite professional caregivers, we identified different relationships, phases, and needs of each stakeholder and issues of trust and information sharing that need improvement. We discuss design considerations on how future information and communication technologies (ICTs) could mitigate the barriers identified in this work.

Unhealthy weight control strategies: An outcome of body image and eating tensions in women of Mexican origin living in rural farming communities.

Unhealthy eating and weight control behaviors are important but modifiable factors that contribute to obesity in majority and minority populations. Studies suggest that these behaviors are common in Mexican American women, but most studies completed to date have focused on college enrolled Mexican American women. Little is known about body weight concerns, eating and weight control behaviors in low acculturated immigrant Mexican women. This qualitative descriptive study utilized two focus groups with 15 women to identify and describe body weight and shape perceptions, and thoughts and behaviors related to eating and weight control of low acculturated Mexican American living in disadvantaged economic situations. Conventional content analysis was used to analyze data and three main themes were identified: (1) body weight values and concerns, (2) eating and food, and (3) weight loss strategies and consequences. The first two themes shared five subthemes including emotion, health, age, family, and culture. Results suggest Mexican American women experience weight concerns that are in conflict with food/eating values and experiences. This conflict is influenced by cultural, family, and inter/intrapersonal factors and contributes to unhealthy eating and weight control behavior. The transition and assimilation to the United States is complex and dynamic. Thus understanding how the conflict regarding body weight and food influence Mexican American women's health behaviors is important and provides valuable knowledge essential to guide further research and intervention development.

Life-Space Predicts Health Care Utilization in Community-Dwelling Older Adults.

OBJECTIVE: To determine whether decline in life-space mobility predicts increased health care utilization among community-dwelling older adults. METHOD: Health care utilization (number of emergency department [ED] visits and hospitalizations) was self-reported during monthly interviews among 419 community-dwelling African American and non-Hispanic White adults aged 75 years and older in The University of Alabama at Birmingham (UAB) Study of Aging II. Life-space was measured using the UAB Life-Space Assessment. Generalized estimating equations were used to examine associations of life-space at the beginning of each interval with health care utilization over the 1-month interval. RESULTS: Overall, 400 participants were followed for 36 months. A 10-point decrease in life-space was associated with 14% increased odds of an ED visit and/or hospitalization over the next month, adjusting for demographics, transportation difficulty, comorbidity, and having a doctor visit in the last month. DISCUSSION: Life-space is a practical alternative in predicting future health care utilization to performance-based measures, which can be difficult to incorporate into clinical or public health practice.

Development of an Ecological Momentary Assessment Mobile App for a Low-Literacy, Mexican American Population to Collect Disordered Eating Behaviors.

BACKGROUND: Ecological momentary assessment (EMA) is a popular method for understanding population health in which participants report their experiences while in naturally occurring contexts in order to increase the reliability and ecological validity of the collected data (as compared to retrospective recall). EMA studies, however, have relied primarily on text-based questionnaires, effectively eliminating low-literacy populations from the samples. OBJECTIVE: To provide a case study of design of an EMA mobile app for a low-literacy population. In particular, we present the design process and final design of an EMA mobile app for low literate, Mexican American women to record unhealthy eating and weight control behaviors (UEWCBs). METHODS: An iterative, user-centered design process was employed to develop the mobile app. An existing EMA protocol to measure UEWCBs in college-enrolled Mexican American women was used as the starting point for the application. The app utilizes an icon interface, with optional audio prompts, that is culturally sensitive and usable by a low-literacy population. A total of 41 women participated over the course of 4 phases of the design process, which included 2 interview and task-based phases (n=8, n=11), focus groups (n=15), and a 5-day, in situ deployment (n=7). RESULTS: Participants' mental models of UEWCBs differed substantially from prevailing definitions found in the literature, prompting a major reorganization of the app interface. Differences in health literacy and numeracy were better identified with the Newest Vital Sign tool, as compared with the Short Assessment of Health Literacy tool. Participants had difficulty imagining scenarios in the interviews to practice recording a specific UEWCB; instead, usability was best tested in situ. Participants were able to use the EMA mobile app over the course of 5 days to record UEWCBs. CONCLUSIONS: Results suggest that the iterative, user-centered design process was essential for designing the app to be made usable by the target population. Simply taking the protocol designed for a higher-literacy population and replacing words with icons and/or audio would have been unsuccessful with this population.

PM2: a partitioning-mining-measuring method for identifying progressive changes in older adults' sleeping activity.

As people age, their health typically declines, resulting in difficulty in performing daily activities. Sleep-related problems are common issues with older adults, including shifts in circadian rhythms. A detection method is proposed to identify progressive changes in sleeping activity using a three-step process: partitioning, mining, and measuring. Specifically, the original spatiotemporal representation of each sleeping activity instance was first transformed into a sequence of equal-sized segments, or symbols, via a partitioning process. A data-mining-based algorithm was proposed to find symbols that are not present in all instances of a sleeping activity. Finally, a measuring process was responsible for evaluating the changes in these symbols. Experimental evaluation conducted on a group of datasets of older adults showed that the proposed method is able to identify progressive changes in sleeping activity.

Designing Consumer Health Technologies for the Treatment of Patients With Depression: A Health Practitioner's Perspective.

BACKGROUND: The consumer health technologies used by patients on a daily basis can be effectively leveraged to assist them in the treatment of depression. However, because treatment for depression is a collaborative endeavor, it is important to understand health practitioners' perspectives on the benefits, drawbacks, and design of such technologies. OBJECTIVE: The objective of this research was to understand how patients and health practitioners can effectively and successfully influence the design of consumer health treatment technologies for treating patients with depression. METHODS: A group of 10 health practitioners participated in individual semistructured contextual interviews at their offices. Health practitioners rated an a priori identified list of depression indicators using a 7-point Likert scale and generated a list of depression indicators. Finally, health practitioners were asked to rate the perceived usefulness of an a priori identified list of depression treatment technologies using a 7-point Likert scale. RESULTS: Of the 10 health practitioners interviewed, 5 (50%) were mental health practitioners, 3 (30%) nurses, and 2 (20%) general practitioners. A total of 29 unique depression indicators were generated by the health practitioners. These indicators were grouped into 5 high-level categories that were identified by the research team and 2 clinical experts: (1) daily and social functioning, (2) medication, (3) nutrition and physical activity, (4) demographics and environment, and (5) suicidal thoughts. These indicators represent opportunities for designing technologies to support health practitioners who treat patients with depression. The interviews revealed nuances of the different health practitioners' clinical practices and also barriers to using technology to guide the treatment of depression. These barriers included (1) technology that did not fit within the current practice or work infrastructure, (2) technology that would not benefit the current treatment process, (3) patients forgetting to use the technology, and (4) patients not being able to afford the technology. CONCLUSIONS: In order to be successful in the treatment of depression, consumer health treatment technologies must address health practitioners' technology concerns early on in the design phase, account for the various types of health practitioners, treatment methods, and clinical practices, and also strive to seamlessly integrate traditional and nontraditional depression indicators within various health practitioners' clinical practices.

Formative evaluation of a mobile liquid portion size estimation interface for people with varying literacy skills.

Chronically ill people, especially those with low literacy skills, often have difficulty estimating portion sizes of liquids to help them stay within their recommended fluid limits. There is a plethora of mobile applications that can help people monitor their nutritional intake but unfortunately these applications require the user to have high literacy and numeracy skills for portion size recording. In this paper, we present two studies in which the low- and the high-fidelity versions of a portion size estimation interface, designed using the cognitive strategies adults employ for portion size estimation during diet recall studies, was evaluated by a chronically ill population with varying literacy skills. The low fidelity interface was evaluated by ten patients who were all able to accurately estimate portion sizes of various liquids with the interface. Eighteen participants did an in situ evaluation of the high-fidelity version incorporated in a diet and fluid monitoring mobile application for 6 weeks. Although the accuracy of the estimation cannot be confirmed in the second study but the participants who actively interacted with the interface showed better health outcomes by the end of the study. Based on these findings, we provide recommendations for designing the next iteration of an accurate and low literacy-accessible liquid portion size estimation mobile interface.

An offline mobile nutrition monitoring intervention for varying-literacy patients receiving hemodialysis: a pilot study examining usage and usability.

OBJECTIVE: Design and evaluation of the dietary intake monitoring application (DIMA) to assist varying-literacy patients receiving hemodialysis to adhere to their prescribed dietary regimen. METHODS: An iterative, user-centered design process informed by Bandura's social cognitive theory was employed to design DIMA--a mobile application that utilizes touch-screen, visual interfaces; barcode scanning; and voice recording to assist varying-literacy patients receiving hemodialysis to self-monitor their diet. A pilot field study was conducted where 18 patients receiving hemodialysis were recruited face-to-face from two dialysis facilities to use DIMA for 6 weeks. Subjects recorded their dietary intake using DIMA and met with research assistants three times each week. All interactions with DIMA were logged. Subjects' interdialytic weight gain was recorded throughout the study. At the end of the study, two face-to-face questionnaires were administered to assess usability and context of use. RESULTS: Subjects were able to use DIMA successfully--12 subjects used DIMA as much or more at the end of the study as they did at the beginning and reported that DIMA helped them change their diet. Subjects had difficulty using the barcode scanner. Viewing past meals was the most used of the reflection mechanisms in DIMA. CONCLUSION: Results suggest that while many design features were useful, some could be improved. In particular, future versions of DIMA will be on a smartphone using a camera for barcode scanning, integrate feedback and past meal reflection into the normal flow of the application, and support visual cues when selecting food items.

The Design of a Mobile Portion Size Estimation Interface for a Low Literacy Population.

Being aware of one's portion sizes is a key component of maintaining a healthy diet, however, it is difficult for individuals especially low literacy populations to estimate their consumption. Nutritional monitoring applications can help but most of them are designed for people with high literacy and numeracy skills. In this paper, we designed and evaluated six portion size estimation interfaces through a Wizard of Oz based experiment using low-fidelity prototypes with ten varying literacy individuals. The interfaces were designed based on the cognitive strategies adults use for reporting portion sizes in diet recall studies. Participants made correct estimates with interfaces designed for liquid and amorphous foods, but had difficulties with those designed for solid foods. Based on these findings, we provide recommendations for designing accurate and low literacy-accessible portion size estimating mobile interfaces.

Merging health literacy with computer technology: self-managing diet and fluid intake among adult hemodialysis patients.

OBJECTIVE: The Dietary Intake Monitoring Application (DIMA) is an electronic dietary self-monitor developed for use on a personal digital assistant (PDA). This paper describes how computer, information, numerical, and visual literacy were considered in development of DIMA. METHODS: An iterative, participatory design approach was used. Forty individuals receiving hemodialysis at an urban inner-city facility, primarily middle-aged and African American, were recruited. RESULTS: Computer literacy was considered by assessing abilities to complete traditional/nontraditional PDA tasks. Information literacy was enhanced by including a Universal-Product-Code (UPC) scanner, picture icons for food with no UPC code, voice recorder, and culturally sensitive food icons. Numerical literacy was enhanced by designing DIMA to compute real-time totals that allowed individuals to see their consumption relative to their dietary prescription. Visual literacy was considered by designing the graphical interface to convey intake data over a 24-h period that could be accurately interpreted by patients. Pictorial icons for feedback graphs used objects understood by patients. PRACTICE IMPLICATIONS: Preliminary data indicate the application is extremely helpful for individuals as they self-monitor their intake. If desired, DIMA could also be used for dietary counseling.