People with multiple chronic conditions (MCC) face challenges planning health care collaboratively with primary care clinicians, particularly when their priorities conflict. These challenges intensify with symptoms of anxiety or depression. Elicitation of patients' values is promoted as a means to aligning patient and clinician priorities in primary care, and as a component of psychotherapy for anxiety and depression. But, these approaches remain siloed. We conducted a qualitative interview study to understand patients' preferences for Technology Enabled Services (TESs) to coordinate values elicitation across primary and mental health care settings. Many participants preferred face-to-face elicitation by a mental health clinician; some preferred elicitation via telehealth and some preferred self-directed elicitation. Participants' preferences were influenced by: 1) how they perceived the rationale and benefits of values elicitation; 2) how they perceived the training and credibility of people facilitating elicitation; and 3) how they perceived their own capacity to engage in values elicitation. Participants also shared numerous concerns about values elicitation that warrant critical examination of TESs to support it.

Individuals with multiple chronic health conditions (MCC) often face an overwhelming set of self-management work, resulting in a need to set care priorities. Yet, much self-management work is invisible to healthcare providers. This study aimed to understand how to support the development and sharing of connections between personal values and self-management tasks through the facilitated use of an interactive visualization system: Conversation Canvas. We conducted a field study with 13 participants with MCC, 3 caregivers, and 7 primary care providers in Washington State. Analysis of interviews with MCC participants showed that developing visualizations of connections between personal values, self-management tasks, and health conditions helped individuals make sense of connections relevant to their health and wellbeing, recognize a road map of central issues and their impacts, feel respected and understood, share priorities with providers, and support value-aligned changes. These findings demonstrated potential for the guided process and visualization to support priorities-aligned care.

People with multiple chronic conditions (MCC) need support to identify and articulate how their personal values relate to their health. We drew on previous research involving people with MCC to develop three prototypes for supporting reflection on relationships between values and health. We tested these prototypes in a qualitative study involving 12 people with MCC. We identified benefits and limitations to building on patients' existing visit-preparation practices; revealed varying levels of comfort with deep, exploratory reflection involving a facilitator; and found that reflection oriented toward the future could elicit hopeful attitudes and plans for change, while reflection on the past elicited strong resistance. We discuss these findings in relation to previous literature on designing for reflection in three areas: shifting between self-guided and facilitator-guided reflection, balancing between outcome-oriented and exploratory reflection, and exploring temporality in reflection.

The diagnosis of cancer brings about significant changes in the life of a child. In addition to physical pain, pediatric patients face psychological and social challenges. At the same time, some patients also have positive experiences with and attitudes toward their illness and treatment. Drawing on 19 semi-structured interviews with pairs of pediatric cancer patients and their parental caregivers, we examined patients' perspectives on their experience of living with cancer. We identified four salient themes in patients' positive experiences: future-oriented thinking, developing strong personal bonds and relationships, gaining knowledge and life experience, and developing self-management and coping skills. Collectively, the patients' positive experiences indicate that they adapt to their new lives through an evolving process. Based on this process, we provide design implications for health technologies to support and promote positive experiences during illness and treatment.

People with multiple chronic conditions (MCC) often disagree with healthcare providers on priorities for care, leading to worse health outcomes. To align priorities, there is a need to support patient-provider communication about what patients consider important for their well-being and health (i.e., their personal values). To address barriers to communication about values, we conducted a two-part study with key stakeholders in MCC care: patients, informal caregivers, and providers. In Part I, co-design activities generated seven dimensions that characterize stakeholders' diverse ideas for supporting communication about values: explicitness, effort, disclosure, guidance, intimacy, scale, and synchrony. In Part II, we used the dimensions to generate three design concepts and presented them in focus groups to further scrutinize findings from Part I. Based on these findings we outline directions for research and design to improve patient-provider communication about patients' personal values.

Individuals with multiple chronic conditions (MCC) experience the overwhelming burden of treating MCC and frequently disagree with their providers on priorities for care. Aligning self-care with patients' values may improve healthcare for these patients. However, patients' values are not routinely discussed in clinical conversations and patients may not actively share this information with providers. In a qualitative field study, we interviewed 15 patients in their homes to investigate techniques that encourage patients to articulate values, self-care, and how they relate. Study activities facilitated self-reflection on values and self-care and produced varying responses, including: raising consciousness, evolving perspectives, identifying misalignments, and considering changes. We discuss how our findings extend prior work on supporting reflection in HCI and inform the design of tools for improving care for people with MCC.

In pediatric chronic care, the treatment process affects not just the child's physical health, but his or her psychosocial and emotional development. As a result, caring for pediatric patients with a chronic illness such as cancer is becoming a daunting task for parental caregivers. They are expected to fulfill the caregiving needs of managing the child's health condition and treatment while also meeting the parenting needs of translating knowledge, communicating about the illness, and making numerous decisions on a daily basis for their sick child due to the child's young age. Drawing on 15 semi-structured interviews, we examined parental caregivers' perspectives on raising a child while also managing the child's health. We identified three tensions that participants encountered as they balanced parenting and caregiving responsibilities: (i) tension between ensuring the child's health and safety and attending to the child's social development, (ii) tension between disclosing health-related information and minimizing the psychological burden on the child, and (iii) tension between rewarding the child's cooperation in treatment and maintaining discipline. Together, these tensions reveal an ongoing process through which caregivers assess and interpret their actions and responsibilities relative to anticipated consequences across multiple time scales. These findings reveal opportunities for sociotechnical systems to account for and support this active process of iterative cycles of assessment.

Eliciting, understanding, and honoring patients' values- the things most important to them in daily life-is a cornerstone of patient-centered care. However, this rarely occurs explicitly as a routine part of clinical practice. This is particularly problematic for individuals with multiple chronic conditions (MCC) because they face difficult choices about how to balance competing demands for self-care in accordance with their values. In this study, we sought to inform the design of interventions to support conversations about patient values between patients with MCC and their health care providers. We conducted a field study that included observations of 21 clinic visits for patients who have MCC, and interviews with 16 care team members involved in those visits. This paper contributes a practice-based account of ways in which providers engage with patient values, and discusses how future work in interactive systems design might extend and enrich these engagements.

Individuals with multiple chronic conditions (MCC) collaborate with spousal caregivers daily to pursue what is most important to their health and well-being. Previous research in human-computer interaction has supported individuals with chronic conditions or their caregivers, but little has supported both as a unit. We conducted a field study with 12 patient-caregiver dyads, all married and living together, to identify partners' values and how they shape collaborative management of MCC. Partners' coinciding values motivated them to empathize with and support each other in the face of challenges related to health and well-being. When their values were asymmetric, they perceived tensions between individual autonomy and their ability to coordinate with their partner. These findings illustrate the rich design context of managing MCC in spousal relationships. Systems to support partners in this context could help them overcome asymmetric values, but they should balance this with support for individual autonomy.

The field of biomedical informatics experienced a productive 2015 in terms of research. In order to highlight the accomplishments of that research, elicit trends, and identify shortcomings at a macro level, a 19-person team conducted an extensive review of the literature in clinical and consumer informatics. The result of this process included a year-in-review presentation at the American Medical Informatics Association Annual Symposium and a written report (see supplemental data). Key findings are detailed in the report and summarized here. This article organizes the clinical and consumer health informatics research from 2015 under 3 themes: the electronic health record (EHR), the learning health system (LHS), and consumer engagement. Key findings include the following: (1) There are significant advances in establishing policies for EHR feature implementation, but increased interoperability is necessary for these to gain traction. (2) Decision support systems improve practice behaviors, but evidence of their impact on clinical outcomes is still lacking. (3) Progress in natural language processing (NLP) suggests that we are approaching but have not yet achieved truly interactive NLP systems. (4) Prediction models are becoming more robust but remain hampered by the lack of interoperable clinical data records. (5) Consumers can and will use mobile applications for improved engagement, yet EHR integration remains elusive.

When patients' decisions about health care priorities conflict with those of their health care providers, patients' health outcomes suffer. Patients' values for health and well-being influence their healthcare priorities, but recent work suggests that the values discussed in clinical settings do not reflect the full breadth of patients' values. To address an evidence gap regarding how discussions about values occur in clinical settings, we conducted a field study with patients with multiple chronic conditions and their health care providers, including clinical observations, interviews, and home visits. We report on the extent to which certain categories of patients' values identified in prior research were discussed in clinic visits. We then discuss how patients and providers coordinated their perspectives to establish connections among patients' values and health concerns. These findings have implications for the design of systems to support patient-provider communication to incorporate patients' values and promote concordant priorities for health care.

To improve care for the growing number of older adults with multiple chronic conditions, physicians and other healthcare providers need to better understand what is most important in the lives of these patients. In a qualitative study of home visits with patients and family caregivers, we found that patients withhold information from providers when communicating about what they deem important to their health and well-being. We examine the various motivations and factors that explain communication boundaries between patients and their healthcare providers. Patients' disclosures reflected perceptions of what was pertinent to share, assumptions about the consequences of sharing, and the influence of interpersonal relationships with providers. Our findings revealed limitations of existing approaches to support patient-provider communication and identified challenges for the design of systems that honor patient needs and preferences.