OBJECTIVE: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child's caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare. MATERIALS AND METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT. RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network. DISCUSSION: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user. CONCLUSION: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.

As the informatics community grows in its ability to address health disparities, there is an opportunity to expand our impact by focusing on the disability community as a health disparity population. Although informaticians have primarily catered design efforts to one disability at a time, digital health technologies can be enhanced by approaching disability from a more holistic framework, simultaneously accounting for multiple forms of disability and the ways disability intersects with other forms of identity. The urgency of moving toward this more holistic approach is grounded in ethical, legal, and design-related rationales. Shaped by our research and advocacy with the disability community, we offer a set of guidelines for effective engagement. We argue that such engagement is critical to creating digital health technologies which more fully meet the needs of all disabled individuals.

OBJECTIVE: Monitoring technology may assist in managing self-injurious behavior (SIB), a pervasive concern in autism spectrum disorder (ASD). Affiliated stakeholder perspectives should be considered to design effective and accepted SIB monitoring methods. We examined caregiver experiences to generate design guidance for SIB monitoring technology. MATERIALS AND METHODS: Twenty-three educators and 16 parents of individuals with ASD and SIB completed interviews or focus groups to discuss needs related to monitoring SIB and associated technology use. RESULTS: Qualitative content analysis of participant responses revealed 7 main themes associated with SIB and technology: triggers, emotional responses, SIB characteristics, management approaches, caregiver impact, child/student impact, and sensory/technology preferences. DISCUSSION: The derived themes indicated areas of emphasis for design at the intersection of monitoring and SIB. Systems design at this intersection should consider the range of manifestations of and management approaches for SIB. It should also attend to interactions among children with SIB, their caregivers, and the technology. Design should prioritize the transferability of physical technology and behavioral data as well as the safety, durability, and sensory implications of technology. CONCLUSIONS: The collected stakeholder perspectives provide preliminary groundwork for an SIB monitoring system responsive to needs as articulated by caregivers. Technology design based on this groundwork should follow an iterative process that meaningfully engages caregivers and individuals with SIB in naturalistic settings.

The COVID-19 pandemic has once again highlighted the ubiquity and persistence of health inequities along with our inability to respond to them in a timely and effective manner. There is an opportunity to address the limitations of our current approaches through new models of informatics-enabled research and clinical practice that shift the norm from small- to large-scale patient engagement. We propose augmenting our approach to address health inequities through informatics-enabled citizen science, challenging the types of questions being asked, prioritized, and acted upon. We envision this democratization of informatics that builds upon the inclusive tradition of community-based participatory research (CBPR) as a logical and transformative step toward improving individual, community, and population health in a way that deeply reflects the needs of historically marginalized populations.

The widespread use of telehealth resulting from the COVID-19 pandemic has the potential to further exacerbate inequities faced by people with disabilities. Although, for some members of the disability community, the option to engage with telehealth may result in reduced barriers to care, for others, inadequate attention to the design, implementation, and policy dimensions may be detrimental. Addressing such considerations is imperative to mitigate health inequities faced by the disability community.

A 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.

BACKGROUND AND SIGNIFICANCE: 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. OBJECTIVE: 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. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSION: 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.

In alignment with a major shift toward patient-centered care as the model for improving care in our health system, informatics is transforming patient-provider relationships and overall care delivery. AMIA's 2013 Health Policy Invitational was focused on examining existing challenges surrounding full engagement of the patient and crafting a research agenda and policy framework encouraging the use of informatics solutions to achieve this goal. The group tackled this challenge from educational, technical, and research perspectives. Recommendations include the need for consumer education regarding rights to data access, the need for consumers to access their health information in real time, and further research on effective methods to engage patients. This paper summarizes the meeting as well as the research agenda and policy recommendations prioritized among the invited experts and stakeholders.

Designing patient-centered consumer health informatics (CHI) applications requires understanding and creating alignment with patients' and their family members' health-related activities, referred to here as 'patient work'. A patient work approach to CHI draws on medical social science and human factors engineering models and simultaneously attends to patients, their family members, activities, and context. A patient work approach extends existing approaches to CHI design that are responsive to patients' biomedical realities and personal skills and behaviors. It focuses on the embeddedness of patients' health management in larger processes and contexts and prioritizes patients' perspectives on illness management. Future research is required to advance (1) theories of patient work, (2) methods for assessing patient work, and (3) techniques for translating knowledge of patient work into CHI application design. Advancing a patient work approach within CHI is integral to developing and deploying consumer-facing technologies that are integrated with patients' everyday lives.

In their response to our original paper, “Transforming Consumer Health Informatics through a Patient Work Framework: Connecting Patients to Context,” Marceglia and colleagues propose an architecture that integrates the patient work framework into a higher-order framework linking consumer health informatics (CHI) applications and professional health information systems (designated by the authors as the health-Information Technology (IT) ecosystem).1 The purpose of our letter is threefold. First, we detail how an expanded understanding of the patient work framework already conceptually encompasses the larger contexts in which CHI use must occur. Second, we assert that meaningful application of the patient work perspective yields implications not only for integration with professional health information systems but also with the larger information infrastructures within the community. Third, we propose modifications to Marceglia and colleagues’ architecture to explicitly represent a “shared space” between CHI applications and professional health information systems; this space contains collaborative work and collaborative informatics. Our original patient work framework was intended to serve as a foundation for CHI design by enabling the understanding of people, their daily contexts, and their daily activities. As such, we limited the scope of our discussion to the immediate home and community environments of the patient. We agree, however, with Marceglia and colleagues that a deeper understanding of the macrostructures encompassing patient work is required. This understanding is necessary not only for specifying constraints on the design outcome, but also for generating creative design alternatives. Larger macrostructures are included in the human factor engineering and social science theories that form the core of the patient work framework; consequently, they are already conceptually embedded.2–4 These macrostructures include not only the larger technological infrastructure (including, but not limited to, the health-IT ecosystem specified by Marceglia and colleagues), but also the economic, regulatory, and policy landscapes. For example, awareness of insurance policies may lead designers to plan for a future in which CHI applications are covered entities. However, designers of applications for people with low socioeconomic status and less generous health insurance plans may need to pursue low-cost alternatives. Designing for populations that use older hardware or operating systems will similarly require technological challenges to be understood and addressed, such as the backward compatibility of mHealth applications and Short Message Service (SMS)-based alternatives. In the phase of conceptual design, the second step in our user-centered design process, integrating knowledge of these broader contexts is particularly salient. Although we agree that the patient work framework can produce valuable insights into connecting CHI applications with professional health information systems, we assert that its technical implications are, in fact, much broader. As an investigational framework, patient work also illuminates numerous areas of connection to a more broadly conceptualized health-IT ecosystem that includes the information infrastructures of patients’ homes and communities. To illustrate, we offer a few examples of design alternatives that build upon a recognition of this larger health-IT ecosystem. In the category “physical environment,” neighborhood walkability scores and safety information, along with patient health and social network data, may inform the development of strategies for integrating therapeutic physical activity into patients’ daily lives. Moreover, establishing a connection between patients and relevant environmental data may facilitate health management planning (e.g., providing a pollen count warning for patients with asthma triggered by seasonal allergies). Smart reminders may also help patients and their caregivers anticipate medication refills when medication usage is seasonally higher. Similarly, the analysis of data from the category “articulation work” may reveal transportation challenges, indicating that linking bus routes, schedules, and location data with patient reminders may assist with appointment-keeping. Long-term solutions may involve linking patients with data regarding insurers that provide transportation assistance or social media–facilitated informal transportation networks. This integrated approach moves beyond the vision of seamless exchange of patient health information to the seamless exchange of all information that, from the perspective of social determinants of health, shapes patient outcomes.5 Thus, technical architectures to support patient work may be infinitely more complex than those that facilitate data exchange between CHI applications and professional health information systems, despite the importance of efforts in that direction. The architecture proposed by Marceglia and colleagues creates a clear distinction between CHI applications and professional health information systems. However, we assert that patient and health care provider work are often jointly constructed and performed (e.g., patient-clinician communication/secure messaging, medication reconciliation, family-centered pediatric rounds, and cancer treatment planning). The clinical encounter is often grounded in patient narratives that relate the experience of self-management in the home. Similarly, patients’ self-management practices in the home are often influenced by discussions with providers in clinical settings. Patients’ health management practices in the home may also involve the presence of health professionals such as physical therapists, social workers, and home care nurses. Consequently, we contend that the proposed architecture should be expanded to contain a middle space for collaborative professional-patient work2 and informatics solutions (see Figure 1). Collaborative informatics solutions include tethered personal health records, which enable the sharing of both clinic-generated data with patients and patient-generated data with health care providers. We believe that this amendment to Marceglia and colleagues’ approach may yield promising directions for system design, focusing on the interconnectedness of and interactions between both sets of work systems. Informatics tools based on such an understanding would promote interoperability not only at the technological and semantic levels but also at the level of work processes. Three forms of work activity performed by professionals, patients, and families, and corresponding technologies (adapted from Holden et al. 20132 and Marceglia et al. 20141). Achieving the full vision of informatics-supported patient engagement will require understanding and designing solutions that integrate with the numerous macrostructures within which patient work is performed. It will require creating CHI applications that communicate not only with professional health information systems but also with the larger information infrastructures of the community. Finally, it will further necessitate creating informatics solutions that recognize the collaborative nature of work that ultimately maintains and improves health.