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User-Centered Design Groups to Engage Patients and Caregivers with a Personalized Health Information Technology Tool.

ABSTRACT: Health information technology (IT) has opened exciting avenues for capturing, delivering and sharing data, and offers the potential to develop cost-effective, patient-focused applications. In recent years, there has been a proliferation of health IT applications such as outpatient portals. Rigorous evaluation is fundamental to ensure effectiveness and sustainability, as resistance to more widespread adoption of outpatient portals may be due to lack of user friendliness. Health IT applications that integrate with the existing electronic health record and present information in a condensed, user-friendly format could improve coordination of care and communication. Importantly, these applications should be developed systematically with appropriate methodological design and testing to ensure usefulness, adoption, and sustainability. Based on our prior work that identified numerous information needs and challenges of HCT, we developed an experimental prototype of a health IT tool, the BMT Roadmap. Our goal was to develop a tool that could be used in the real-world, daily practice of HCT patients and caregivers (users) in the inpatient setting. Herein, we examined the views, needs, and wants of users in the design and development process of the BMT Roadmap through user-centered Design Groups. Three important themes emerged: 1) perception of core features as beneficial (views), 2) alerting the design team to potential issues with the user interface (needs); and 3) providing a deeper understanding of the user experience in terms of wider psychosocial requirements (wants). These findings resulted in changes that led to an improved, functional BMT Roadmap product, which will be tested as an intervention in the pediatric HCT population in the fall of 2015 (ClinicalTrials.govNCT02409121).

SUBMITTER: Maher M

PROVIDER: S-EPMC4716891 | biostudies-literature | 2016 Feb

REPOSITORIES: biostudies-literature

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User-Centered Design Groups to Engage Patients and Caregivers with a Personalized Health Information Technology Tool.

Maher Molly M Kaziunas Elizabeth E Ackerman Mark M Derry Holly H Forringer Rachel R Miller Kristen K O'Reilly Dennis D An Larry C LC Tewari Muneesh M Hanauer David A DA Choi Sung Won SW

Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation 20150905 2

Health information technology (IT) has opened exciting avenues for capturing, delivering and sharing data, and offers the potential to develop cost-effective, patient-focused applications. In recent years, there has been a proliferation of health IT applications such as outpatient portals. Rigorous evaluation is fundamental to ensure effectiveness and sustainability, as resistance to more widespread adoption of outpatient portals may be due to lack of user friendliness. Health IT applications th ...[more]

PMID: 26343948

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Project description:IntroductionPatients with primary glomerular disease (GN) have unique management needs. We describe the design of a user-centered, patient-facing electronic health (eHealth) tool to support GN management.MethodsWe surveyed patients and GN expert nephrologists on disease management tasks, educational needs, and barriers and facilitators of eHealth tool use. Results were summarized and presented to patients, nephrologists, engineers, and a behavioral and implementation science expert in stakeholder meetings to jointly design an eHealth tool. Key themes from the meetings are described using rapid qualitative analysis.ResultsSixty-six patients with minimal change disease, focal segmental glomerulosclerosis, IgA nephropathy, and membranous nephropathy responded to the survey, as well as 25 nephrologists from the NIH-funded Cure Glomerulonephropathy study network. Overall, patients performed fewer management tasks and acknowledged fewer informational needs than recommended by nephrologists. Patients were more knowledgeable about eHealth tools than nephrologists. Nine patient stakeholders reflected on the survey findings and noted a lack of awareness of key recommended management tasks and receiving little guidance from nephrologists on using eHealth. Key themes and concepts from the stakeholder meetings about eHealth tool development included the need for customizable design, trustworthy sources, seamless integration with other apps and clinical workflow, and reliable data tracking. The final design of our eHealth tool, the UrApp System, has 5 core features: "Profile" generates personalized data tracking, educational information, facilitation with provider discussions and inputting other preferences; "Data Tracking" displays patient health data with the ability to communicate important trends to patients and nephrologists; "Resources" provides trusted education information in a personalized manner; "Calendar" displays key events and generate reminders; and "Journal" facilitates information documentation using written or audio notes.ConclusionOur theory- and evidenced-based, stakeholder-engaged design process created designs for an eHealth tool to support the unique needs of patients with GN, optimized for effectiveness and implementation.

Project description:BackgroundPersonalized asthma management depends on a clinician's ability to efficiently review patient's data and make timely clinical decisions. Unfortunately, efficient and effective review of these data is impeded by the varied format, location, and workflow of data acquisition, storage, and processing in the electronic health record. While machine learning (ML) and clinical decision support tools are well-positioned as potential solutions, the translation of such frameworks requires that barriers to implementation be addressed in the formative research stages.ObjectiveWe aimed to use a structured user-centered design approach (double-diamond design framework) to (1) qualitatively explore clinicians' experience with the current asthma management system, (2) identify user requirements to improve algorithm explainability and Asthma Guidance and Prediction System prototype, and (3) identify potential barriers to ML-based clinical decision support system use.MethodsAt the "discovery" phase, we first shadowed to understand the practice context. Then, semistructured interviews were conducted digitally with 14 clinicians who encountered pediatric asthma patients at 2 outpatient facilities. Participants were asked about their current difficulties in gathering information for patients with pediatric asthma, their expectations of ideal workflows and tools, and suggestions on user-centered interfaces and features. At the "define" phase, a synthesis analysis was conducted to converge key results from interviewees' insights into themes, eventually forming critical "how might we" research questions to guide model development and implementation.ResultsWe identified user requirements and potential barriers associated with three overarching themes: (1) usability and workflow aspects of the ML system, (2) user expectations and algorithm explainability, and (3) barriers to implementation in context. Even though the responsibilities and workflows vary among different roles, the core asthma-related information and functions they requested were highly cohesive, which allows for a shared information view of the tool. Clinicians hope to perceive the usability of the model with the ability to note patients' high risks and take proactive actions to manage asthma efficiently and effectively. For optimal ML algorithm explainability, requirements included documentation to support the validity of algorithm development and output logic, and a request for increased transparency to build trust and validate how the algorithm arrived at the decision. Acceptability, adoption, and sustainability of the asthma management tool are implementation outcomes that are reliant on the proper design and training as suggested by participants.ConclusionsAs part of our comprehensive informatics-based process centered on clinical usability, we approach the problem using a theoretical framework grounded in user experience research leveraging semistructured interviews. Our focus on meeting the needs of the practice with ML technology is emphasized by a user-centered approach to clinician engagement through upstream technology design.

Project description:BackgroundChildhood overweight and obesity are major health challenges in the United States. One of the recommendations to combat obesity is to maintain a healthy diet, which is often best supported by eating home-cooked meals to control cooking methods, ingredients, and portions. Diet control through home cooking is challenged because of the decline in culinary skills in the population and a paucity of effective culinary nutrition education (CNE) programs. Providing technology-enabled CNE (CNE-tech) to overweight and obese adolescents can equip them with life skills that can assist them in the future. Such skills can facilitate saving money, eating healthier, and creating social environments. In addition, CNE builds cooking confidence and food literacy that in turn can build adolescent self-efficacy, particularly toward managing their health behaviors.ObjectiveThis study aimed to inform functionalities, design requirements, and the context of use for CNE-tech that could enhance overweight and obese adolescents' healthy food literacy, cooking confidence, and general self-efficacy with regard to self-management to ultimately promote healthy lifestyle management.MethodsThe design science study was completed in 2 distinct phases engaging overweight and obese adolescents, parents of overweight and obese adolescents, and the health care providers that treat adolescents with these conditions. Phase 2, our primary source of data, involved user-centered design methods including the following: (1) early stage prototype usability analysis, (2) semistructured interviews with 70 overweight or obese adolescents engaged in a healthy behavior program, and (3) semistructured interviews with 10 health care providers. Data were analyzed using constant comparison analysis to identify functionalities, design requirements, and inform the context of use of CNE-tech.ResultsData revealed specific desired functionalities for the CNE-tech related to building cooking skills, populating a healthy recipe database, suggesting healthy alternatives, supporting the construction of a healthy plate, and the ability to share healthy recipes and cooking accomplishments. Moreover, the adolescents provided design requirements pertaining to the presentation (eg, vivid colors, semirealistic images, and cooking sounds), use of multimedia, and gaming. Data further revealed contextual factors, such as shared experiences with family members and enhanced continued use.ConclusionsWe demonstrate the potentiality of creating CNE-tech that could effectively lead to better self-care and induce sustainable behavioral change as it facilitates skill building, self-efficacy, and a pathway that enables overweight and obese adolescents to influence cooking habits in their family home and future dwellings. Our CNE-tech-proposed solution aligns with the goals of overweight and obese adolescents and also reflects existing theories about behavioral change.

Project description:BackgroundRegular physical activity (PA), healthy habits, and an appropriate diet are recommended guidelines to maintain a healthy lifestyle. A healthy lifestyle can help to avoid chronic diseases and long-term illnesses. A monitoring and automatic personalized lifestyle recommendation system (i.e., automatic electronic coach or eCoach) with considering clinical and ethical guidelines, individual health status, condition, and preferences may successfully help participants to follow recommendations to maintain a healthy lifestyle. As a prerequisite for the prototype design of such a helpful eCoach system, it is essential to involve the end-users and subject-matter experts throughout the iterative design process.MethodsWe used an iterative user-centered design (UCD) approach to understend context of use and to collect qualitative data to develop a roadmap for self-management with eCoaching. We involved researchers, non-technical and technical, health professionals, subject-matter experts, and potential end-users in design process. We designed and developed the eCoach prototype in two stages, adopting different phases of the iterative design process. In design workshop 1, we focused on identifying end-users, understanding the user's context, specifying user requirements, designing and developing an initial low-fidelity eCoach prototype. In design workshop 2, we focused on maturing the low-fidelity solution design and development for the visualization of continuous and discrete data, artificial intelligence (AI)-based interval forecasting, personalized recommendations, and activity goals.ResultsThe iterative design process helped to develop a working prototype of eCoach system that meets end-user's requirements and expectations towards an effective recommendation visualization, considering diversity in culture, quality of life, and human values. The design provides an early version of the solution, consisting of wearable technology, a mobile app following the "Google Material Design" guidelines, and web content for self-monitoring, goal setting, and lifestyle recommendations in an engaging manner between the eCoach app and end-users.ConclusionsThe adopted iterative design process brings in a design focus on the user and their needs at each phase. Throughout the design process, users have been involved at the heart of the design to create a working research prototype to improve the fit between technology, end-user, and researchers. Furthermore, we performed a technological readiness study of ProHealth eCoach against standard levels set by European Union (EU).

Project description:BACKGROUND:Violence is a public health problem. Hospital-based violence intervention programs such as the San Francisco Wraparound Project (WAP) have been shown to reduce future violent injury. The WAP model employs culturally competent case managers who recruit and enroll violently injured patients as clients. Client acceptance of the WAP intervention is variable, and program success depends on streamlined, timely communication and access to resources. High rates of smartphone usage in populations who are at risk for violent reinjury create an opportunity to design a tailored information and communications technology (ICT) tool to support hospital-based violence intervention programs. OBJECTIVE:Current evidence shows that ICT tools developed in the health care space may not be successful in engaging vulnerable populations. The goal of this study was to use human-centered design methodology to identify the unique communication needs of the clients and case managers at WAP to design a mobile ICT. METHODS:We conducted 15 semi-structured interviews with users: clients, their friends and families, case managers, and other stakeholders in violence intervention and prevention. We used a human-centered design and general inductive approach to thematic analysis to identify themes in the qualitative data, which were extrapolated to insight statements and then reframed into design opportunities. Wireframes of potential mobile ICT app screens were developed to depict these opportunities. RESULTS:Thematic analysis revealed four main insights that were characterized by the opposing needs of our users. (1) A successful relationship is both professional and personal. Clients need this around the clock, but case managers can only support this while on the clock. (2) Communications need to feel personal, but they do not always need to be personalized. (3) Healing is a journey of skill development and lifestyle changes that must be acknowledged, monitored, and rewarded. (4) Social networks need to provide peer support for healing rather than peer pressure to propagate violence. These insights resulted in the following associated design opportunities: (1) Maximize personal connection while controlling access, (2) allow case managers to personalize automated client interactions, (3) hold clients accountable to progress and reward achievements, and (4) build a connected, yet confidential community. CONCLUSIONS:Human-centered design enabled us to identify unique insights and design opportunities that may inform the design of a novel and tailored mobile ICT tool for the WAP community.

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User-Centered Design Groups to Engage Patients and Caregivers with a Personalized Health Information Technology Tool.

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User-Centered Design Groups to Engage Patients and Caregivers with a Personalized Health Information Technology Tool.

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