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.

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.

The eMERGE Network is establishing methods for electronic transmittal of patient genetic test results from laboratories to healthcare providers across organizational boundaries. We surveyed the capabilities and needs of different network participants, established a common transfer format, and implemented transfer mechanisms based on this format. The interfaces we created are examples of the connectivity that must be instantiated before electronic genetic and genomic clinical decision support can be effectively built at the point of care. This work serves as a case example for both standards bodies and other organizations working to build the infrastructure required to provide better electronic clinical decision support for clinicians.

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.

OBJECTIVE: With the rapid rise in the adoption of patient portals, many patients are gaining access to their personal health information online for the first time. The objective of this study was to examine specific usability barriers to patient portal engagement among a diverse group of patients and caregivers. MATERIALS AND METHODS: We conducted interviews using performance testing and think-aloud methods with 23 patients and 2 caregivers as they first attempted to use features of a newly launched patient portal. RESULTS: In navigating the portal, participants experienced basic computer barriers (eg, difficulty using a mouse), routine computer barriers (eg, mistyping, navigation issues), reading/writing barriers, and medical content barriers. Compared to participants with adequate health literacy, participants with limited health literacy required 2 additional minutes to complete each task and were more likely to experience each type of navigational barrier. They also experienced more inaccuracies in interpreting a test result and finding a treatment plan within an after-visit summary. DISCUSSION: When using a patient portal for the first time, participants with limited health literacy completed fewer tasks unassisted, had a higher prevalence of encountering barriers, took longer to complete tasks, and had more problems accurately interpreting medical information. CONCLUSION: Our findings suggest a strong need for tailored and accessible training and support to assist all vulnerable patients and/or caregivers with portal registration and use. Measuring the health literacy of a patient population might serve as a strong proxy for identifying patients who need the most support in using health technologies.

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.

OBJECTIVE: Online patient portals are being widely implemented; however, no studies have examined whether portals influence health behaviors or outcomes similarly across patient racial/ethnic subgroups. We evaluated longitudinal changes in statin adherence to determine whether racial/ethnic minorities initiating use of the online refill function in patient portals had similar changes over time compared with Whites. METHODS: We examined a retrospective cohort of diabetes patients who were existing patient portal users. The primary exposure was initiating online refill use (either exclusively for all statin refills or occasionally for some refills), compared with using the portal for other tasks (eg, exchanging secure messages with providers). The primary outcome was change in statin adherence, measured as the percentage of time a patient was without a supply of statins. Adjusted generalized estimating equation models controlled for race/ethnicity as a primary interaction term. RESULTS: Fifty-eight percent of patient portal users were white, and all racial/ethnic minority groups had poorer baseline statin adherence compared with Whites. In adjusted difference-in-difference models, statin adherence improved significantly over time among patients who exclusively refilled prescriptions online, even after comparing changes over time with other portal users (4% absolute decrease in percentage of time without medication). This improvement was statistically similar across all racial/ethnic groups. DISCUSSION: Patient portals may encourage or improve key health behaviors, such as medication adherence, for engaged patients, but further research will likely be required to reduce underlying racial/ethnic differences in adherence. CONCLUSION: In a well-controlled examination of diabetes patients' behavior when using a new online feature for their healthcare management, patient portals were linked to better medication adherence across all racial/ethnic groups.

We introduce a mixed-methods approach for determining how people weigh tradeoffs in values related to health and technologies for health self-management. Our approach combines interviews with Q-methodology, a method from psychology uniquely suited to quantifying opinions. We derive the framework for structured data collection and analysis for the Q-methodology from theories of self-management of chronic illness and technology adoption. To illustrate the power of this new approach, we used it in a field study of nine older adults with type 2 diabetes, and nine mothers of children with asthma. Our mixed-methods approach provides three key advantages for health design science in HCI: (1) it provides a structured health sciences theoretical framework to guide data collection and analysis; (2) it enhances the coding of unstructured data with statistical patterns of polarizing and consensus views; and (3) it empowers participants to actively weigh competing values that are most personally significant to them.

What is the role of shared calendars for home health management? Utilizing a maximum variation sampling method, we interviewed 20 adult individuals with diabetes and 20 mothers of children with asthma to understand calendar use in the context of chronic disease home health management. In comparing the experiences of these two groups, we explore participants' use of tools for organizing tasks and appointments, their strategies for capturing health and non-health events in the family calendar system, the ecology of artifacts that intersect with their scheduling tools, and the failures they experienced while managing their calendar systems. Through this work, we offer a context-specific perspective of schedule management strategies for individuals and families who must integrate their handling of chronic illnesses with everyday living.

Patient-provider relationships influence diabetes care; less is known about their impact on online patient portal use. Diabetes patients rated provider communication and trust. In this study, we linked responses to electronic medical record data on being a registered portal user and using secure messaging (SM). We specified regression models to evaluate main effects on portal use, and subgroup analyses by race/ethnicity and age. 52% of subjects were registered users; among those, 36% used SM. Those reporting greater trust were more likely to be registered users (relative risk (RR)=1.14) or SM users (RR=1.29). In subgroup analyses, increased trust was associated with being a registered user among white, Latino, and older patients, as well as SM use among white patients. Better communication ratings were also related to being a registered user among older patients. Since increased trust and communication were associated with portal use within subgroups, this suggests that patient-provider relationships encourage portal engagement.

OBJECTIVES: This study sought to describe the evolution, use, and user satisfaction of a patient Web site providing a shared medical record between patients and health professionals at Group Health Cooperative, a mixed-model health care financing and delivery organization based in Seattle, Washington. DESIGN: This study used a retrospective, serial, cross-sectional study from September 2002 through December 2005 and a mailed satisfaction survey of a random sampling of 2,002 patients. MEASUREMENTS: This study measured the adoption and use of a patient Web site (MyGroupHealth) from September 2002 through December 2005. RESULTS: As of December 2005, 25% (105,047) of all Group Health members had registered and completed an identification verification process enabling them to use all of the available services on MyGroupHealth. Identification verification was more common among patients receiving care in the Integrated Delivery System (33%) compared with patients receiving care in the network (7%). As of December 2005, unique monthly user rates per 1,000 adult members were the highest for review of medical test results (54 of 1,000), medication refills (44 of 1,000), after-visit-summaries (32 of 1,000), and patient-provider clinical messaging (31 of 1,000). The response rate for the patient satisfaction survey was 46% (n = 921); 94% of survey respondents were satisfied or very satisfied with MyGroupHealth overall. Patients reported highest satisfaction (satisfied or very satisfied) for medication refills (96%), patient-provider messaging (93%), and medical test results (86%). CONCLUSION: Use and satisfaction with MyGroupHealth were greatest for accessing services and information involving ongoing, active care and patient-provider communication. Tight integration of Web services with clinical information systems and patient-provider relationships may be important in meeting the needs of patients.