Opportunities and Challenges for Augmented Reality in Family Caregiving: Qualitative Video Elicitation Study.

BACKGROUND: Although family caregivers play a critical role in care delivery, research has shown that they face significant physical, emotional, and informational challenges. One promising avenue to address some of caregivers' unmet needs is via the design of digital technologies that support caregivers' complex portfolio of responsibilities. Augmented reality (AR) applications, specifically, offer new affordances to aid caregivers as they perform care tasks in the home. OBJECTIVE: This study explored how AR might assist family caregivers with the delivery of home-based cancer care. The specific objectives were to shed light on challenges caregivers face where AR might help, investigate opportunities for AR to support caregivers, and understand the risks of AR exacerbating caregiver burdens. METHODS: We conducted a qualitative video elicitation study with clinicians and caregivers. We created 3 video elicitations that offer ways in which AR might support caregivers as they perform often high-stakes, unfamiliar, and anxiety-inducing tasks in postsurgical cancer care: wound care, drain care, and rehabilitative exercise. The elicitations show functional AR applications built using Unity Technologies software and Microsoft Hololens2. Using elicitations enabled us to avoid rediscovering known usability issues with current AR technologies, allowing us to focus on high-level, substantive feedback on potential future roles for AR in caregiving. Moreover, it enabled nonintrusive exploration of the inherently sensitive in-home cancer care context. RESULTS: We recruited 22 participants for our study: 15 clinicians (eg, oncologists and nurses) and 7 family caregivers. Our findings shed light on clinicians' and caregivers' perceptions of current information and communication challenges caregivers face as they perform important physical care tasks as part of cancer treatment plans. Most significant was the need to provide better and ongoing support for execution of caregiving tasks in situ, when and where the tasks need to be performed. Such support needs to be tailored to the specific needs of the patient, to the stress-impaired capacities of the caregiver, and to the time-constrained communication availability of clinicians. We uncover opportunities for AR technologies to potentially increase caregiver confidence and reduce anxiety by supporting the capture and review of images and videos and by improving communication with clinicians. However, our findings also suggest ways in which, if not deployed carefully, AR technologies might exacerbate caregivers' already significant burdens. CONCLUSIONS: These findings can inform both the design of future AR devices, software, and applications and the design of caregiver support interventions based on already available technology and processes. Our study suggests that AR technologies and the affordances they provide (eg, tailored support, enhanced monitoring and task accuracy, and improved communications) should be considered as a part of an integrated care journey involving multiple stakeholders, changing information needs, and different communication channels that blend in-person and internet-based synchronous and asynchronous care, illness, and recovery.

Electronic Consent at US Cancer Centers: A Survey of Practices, Challenges, and Opportunities.

PURPOSE: Digital technologies create opportunities for improving consenting processes in cancer care and research. Yet, little is known about the prevalence of electronic consenting, or e-consent, at US cancer care institutions. METHODS: We surveyed institutions in the National Comprehensive Cancer Network about their capabilities for clinical, research, and administrative e-consents; technologies used; telemedicine consents; multilingual support; evaluations; and opportunities and challenges in moving from paper-based to electronic processes. Responses were summarized across responding institutions. RESULTS: Twenty-five institutions completed the survey (81% response rate). Respondents were from all census regions and included freestanding and matrix cancer centers. Twenty (80%) had e-consent capabilities, with variability in the extent of adoption: One (5%) had implemented e-consent for all clinical, research, and administrative needs while 19 (95%) had a mix of paper and electronic consenting. Among those with e-consent capabilities, the majority (14 of 20, 70%) were using features embedded in their electronic health record. Most had a combination of paper and e-consenting for clinical purposes (18, 72%). About two-thirds relied entirely on paper for research consents (16, 64%) but had at least some electronic processes for administrative consents (15, 60%). Obstacles to e-consenting included challenges with procuring or maintaining hardware, content management, workflow integration, and digital literacy of patients. Successes included positive user experiences, workflow improvements, and better record-keeping. Only two of 20 (10%) respondents with e-consent capabilities had evaluated the impact of automating consent processes. CONCLUSION: E-consent was prevalent in our sample, with 80% of institutions reporting at least some capabilities. Further progress is needed for the benefits of e-consenting to be realized broadly.

Assessment of Oncology Patient Engagement and Interest in Virtual Mind-Body Programming: Moving Toward Personalization of Virtual Care.

PURPOSE: Accelerated by the COVID-19 pandemic, the virtual platform has become a prominent medium to deliver mind-body therapies, but the extent to which patients engage in virtual mind-body programming remains unclear. This study aims to assess oncology patient engagement in a virtual mind-body program. METHODS: We surveyed oncology patients enrolled in a live-streamed (synchronous) virtual mind-body program in May 2021. Patients self-reported engagement by weekly attendance. We applied multivariate regression to identify associations of engagement with sociodemographic and clinical factors. As an exploratory analysis, we used machine learning to partition engagement subgroups to determine preferential interest in prerecorded (asynchronous) mind-body therapy videos. RESULTS: Among 148 patients surveyed (response rate: 21.4%), majority were female (94.5%), White (83.1%), age 65 years or older (64.9%), retired (64.2%), and in survivorship (61.8%). Patient engagement ranged from 1 to 13 classes/week (mean [standard deviation]: 4.23 [2.56]) and was higher for female (ß, .82; 95% CI, 0.01 to 1.62), non-White (ß, .63; 95% CI, 0.13 to 1.13), and retired patients (ß, .50; 95% CI, 0.12 to 0.88). The partition model identified three engagement subgroups: employed (low engagers), retired White (intermediate engagers), and retired non-White (high engagers). Particularly, low engagers had preferential interest in meditation videos (odds ratio, 2.85; 95% CI, 1.24 to 6.54), and both low and high engagers had preferential interest in Tai Chi videos (odds ratio, 2.26; 95% CI, 1.06 to 4.82). CONCLUSION: In this cross-sectional study among oncology patients, engagement in virtual mind-body programming was higher for female, non-White, and retired patients. Our findings suggest the need for both synchronous and asynchronous mind-body programming to meet the diverse needs of oncology patients.

Analysis of a Remote Monitoring Program for Symptoms Among Adults With Cancer Receiving Antineoplastic Therapy.

IMPORTANCE: Electronic patient-reported outcomes (ePROs) may have the potential to improve cancer care delivery by enhancing patient quality of life, reducing acute care visits, and extending overall survival. However, the optimal cadence of ePRO assessments is unknown. OBJECTIVE: To determine patient response preferences and the clinical value associated with a daily cadence for ePROs for patients receiving antineoplastic treatment. DESIGN, SETTING, AND PARTICIPANTS: This quality improvement study of adult patients undergoing antineoplastic treatment assessed a remote monitoring program using ePROs that was developed to manage cancer therapy-related symptoms. ePRO data submitted between October 16, 2018 to February 29, 2020, from a single regional site within the Memorial Sloan Kettering Cancer Center network were included. Data were analyzed from April 2020 to January 2022. EXPOSURE: While undergoing active treatment, patients received a daily ePRO assessment that, based on patient responses, generated yellow (moderate) or red (severe) symptom alerts that were sent to clinicians. MAIN OUTCOMES AND MEASURES: The main outcomes assessed included patient response rate, symptom alert frequency, and an analysis of the clinical value of daily ePROs. RESULTS: A total of 217 patients (median [range] age, 66 [31-92] years; 103 [47.5%] women and 114 [52.5%] men) initiating antineoplastic therapy at high risk for symptoms were monitored for a median (range) of 91 (2-369) days. Most patients had thoracic (59 patients [27.2%]), head and neck (48 patients [22.1%]), or gastrointestinal (43 patients [19.8%]) malignant neoplasms. Of 14 603 unique symptom assessments completed, 7349 (50.3%) generated red or yellow symptom alerts. Symptoms commonly generating alerts included pain (665 assessments [23.0%]) and functional status (465 assessments [16.1%]). Most assessments (8438 assessments [57.8%]) were completed at home during regular clinic hours (ie, 9 am-5 pm), with higher response rates on weekdays (58.4%; 95% CI, 57.5%-59.5%) than on weekend days (51.3%; 95% CI, 49.5%-53.1%). Importantly, 284 of 630 unique red alerts (45.1%) surfaced without a prior yellow alert for the same symptom within the prior 7 days; symptom severity fluctuated over the course of a week, and symptom assessments generating a red alert were followed by an acute care visit within 7 days 8.7% of the time compared with 2.9% for assessments without a red alert. CONCLUSIONS AND RELEVANCE: These findings suggest that daily ePRO assessments were associated with increased insight into symptom management in patients undergoing antineoplastic treatment and symptom alerts were associated with risk of acute care.

ChemoPalRx-A Mobile App That Enhances Chemotherapy Prescription Accuracy: A Cross-Sectional Study.

PURPOSE: ChemoPalRx is a novel provider order entry mobile application for chemotherapy. This study aims to evaluate the accuracy of prescribing chemotherapy using ChemoPalRx versus handwritten orders at a safety-net hospital in Los Angeles. METHODS: In a cross-sectional study from October 2019 to December 2019, we evaluated all outpatient chemotherapy orders for accuracy. Our primary predictor was type of prescription, dichotomized as handwritten or ChemoPalRx. Primary outcome was accuracy, dichotomized as accurate if no error was made on an order and as inaccurate if any error was made. Preplanned subgroup analyses were performed with covariates including provider experience, complexity of order, and day of order submission. We characterized error type and analyzed our data using univariate and multivariate logistic regression models. RESULTS: Among 288 orders (78.5% handwritten; 21.5% ChemoPalRx), prescription accuracy was higher among ChemoPalRx (93.5%) compared with handwritten orders (81.4%; P = .012). In multivariate analysis, prescription accuracy remained superior for ChemoPalRx after adjusting for provider experience, complexity of order, and day of order submission (adjusted odds ratio, 1.82; P = .012). Compared with handwritten orders, ChemoPalRx orders had less missing or incorrect information (1.6% v 13.7%; P = .0016). ChemoPalRx orders were also more accurate on prescriptions that contained two or fewer medications (92.2% v 80.2%; P = .032), submitted on the highest patient-volume clinic day of the week (96.7% v 83.2%; P = .035), and generated by a senior fellow or an attending (97.3% v 76.9%; P = .001). CONCLUSION: ChemoPalRx is associated with improved chemotherapy prescription accuracy over handwritten orders in the safety-net hospital setting and may serve as an alternative prescribing tool for oncology practices.

A Novel Patient Values Tab for the Electronic Health Record: A User-Centered Design Approach.

BACKGROUND: The COVID-19 pandemic has shined a harsh light on a critical deficiency in our health care system: our inability to access important information about patients' values, goals, and preferences in the electronic health record (EHR). At Memorial Sloan Kettering Cancer Center (MSK), we have integrated and systematized health-related values discussions led by oncology nurses for newly diagnosed cancer patients as part of routine comprehensive cancer care. Such conversations include not only the patient's wishes for care at the end of life but also more holistic personal values, including sources of strength, concerns, hopes, and their definition of an acceptable quality of life. In addition, health care providers use a structured template to document their discussions of patient goals of care. OBJECTIVE: To provide ready access to key information about the patient as a person with individual values, goals, and preferences, we undertook the creation of the Patient Values Tab in our center's EHR to display this information in a single, central location. Here, we describe the interprofessional, interdisciplinary, iterative process and user-centered design methodology that we applied to build this novel functionality as well as our initial implementation experience and plans for evaluation. METHODS: We first convened a working group of experts from multiple departments, including medical oncology, health informatics, information systems, nursing informatics, nursing education, and supportive care, and a user experience designer. We conducted in-depth, semistructured, audiorecorded interviews of over 100 key stakeholders. The working group sought consensus on the tab's main content, homing in on high-priority areas identified by the stakeholders. The core content was mapped to various EHR data sources. We established a set of high-level design principles to guide our process. Our user experience designer then created wireframes of the tab design. The designer conducted usability testing with physicians, nurses, and other health professionals. Data validation testing was conducted. RESULTS: We have already deployed the Patient Values Tab to a pilot sample of users in the MSK Gastrointestinal Medical Oncology Service, including physicians, advanced practice providers, nurses, and administrative staff. We have early evidence of the positive impact of this EHR innovation. Audit logs show increasing use. Many of the initial user comments have been enthusiastically positive, while others have provided constructive suggestions for additional tab refinements with respect to format and content. CONCLUSIONS: It is our challenge and obligation to enrich the EHR with information about the patient as a person. Realization of this capability is a pressing public health need requiring the collaboration of technological experts with a broad range of clinical leaders, users, patients, and families to achieve solutions that are both principled and practical. Our new Patient Values Tab represents a step forward in this important direction.

Needs and Perspectives of Cancer Center Stakeholders for Access to Patient Values in the Electronic Health Record.

PURPOSE: High-quality cancer care must incorporate patients' personal values in decision making throughout illness. Unfortunately, patient values are neither consistently elicited nor easily accessible in the electronic health record (EHR). Memorial Sloan Kettering Cancer Center is deploying a major EHR innovation, called the Patient Values Tab, which provides ready access to patients' values and personhood. To inform the Tab's design, we interviewed a large, diverse group of institutional stakeholders to understand their user needs for this Tab. METHODS: Qualitative data were collected through semistructured, audio-recorded, in-person, individual interviews. An interdisciplinary team of four coders conducted a process of thematic content analysis. Thematic saturation was achieved, and member checking was performed. RESULTS: A total of 110 stakeholders were approached and interviewed. Participants comprised a wide range of disciplines or professions and others involved in hospital and/or clinic administration. Analysis revealed the following themes related to important Tab content: personhood, support system or resources, social history, communication preferences, future planning, end of life, and illness and treatment understanding. Participants also discussed implementation considerations, the Tab's potential to improve communication, and privacy implications. CONCLUSION: This study focused on a major EHR innovation to centralize information about values and personhood of patients with cancer. We elicited views of over 100 institutional stakeholders through in-depth interviews that were rigorously analyzed, yielding themes related to content and format that helped guide the Tab's design. The interviews generated a sense of ownership and enthusiasm for the Tab among future users. The Tab's introduction advances the use of the EHR as a driver of the delivery of patient-centered care.

Applying User-Centered Design in the Electronic Health Record (EHR) to Facilitate Patient-Centered Care in Oncology.

Patient-centered care is an essential component of quality health care. To support patient-centered care initiatives at our institution, we created a feature in our EHR to centrally view information about the patient's values, goals and preferences. We applied user-centered design methods to ensure that the aggregate view was easy to use and would meet user needs. We created a six-week plan to iterate through increasingly detailed design mock-ups. We defined 7 user stories that later served as a basis for user testing scripts. We conducted user testing on our third design iteration; we reached theme saturation with 8 testing sessions. We incorporated findings into the fourth design (week 6) but continued to refine the design in parallel to development (through week 20+). The advance directives section required the most attention. We will use a pilot and additional user testing to validate the design and to inform future versions.

Expanding Health Information Exchange Improves Identification of Frequent Emergency Department Users.

STUDY OBJECTIVE: Frequent emergency department (ED) users are of interest to policymakers and hospitals. The objective of this study is to examine the effect of health information exchange size on the identification of frequent ED users. METHODS: We retrospectively analyzed data from Healthix, a health information exchange in New York that previously included 10 hospitals and then grew to 31 hospitals. We divided patients into 3 cohorts: high-frequency ED users with 4 or more visits in any 30-day period, medium-frequency ED users with 4 or more visits in any year, and infrequent ED users with fewer than 4 visits in any year. For both the smaller (10-hospital) and larger (31-hospital) health information exchanges, we compared the identification rate of frequent ED users that was based on hospital-specific data with the corresponding rates that were based on health information exchange data. RESULTS: The smaller health information exchange (n=1,696,279 unique ED patients) identified 11.4% more high-frequency users (33,467 versus 30,057) and 9.5% more medium-frequency users (109,497 versus 100,014) than the hospital-specific data. The larger health information exchange (n=3,684,999) identified 19.6% more high-frequency patients (52,727 versus 44,079) and 18.2% more medium-frequency patients (222,574 versus 192,541) than the hospital-specific data. Expanding from the smaller health information exchange to the larger one, we found an absolute increase of 8.2% and 8.7% identified high- and medium-frequency users, respectively. CONCLUSION: Increasing health information exchange size more accurately reflects how patients access EDs and ultimately improves not only the total number of identified frequent ED users but also their identification rate.

An Applied Framework in Support of Shared Decision Making about BRCA Genetic Testing.

The United States Preventive Services Taskforce recommends that primary care providers screen patients for an increased risk of carrying a BRCA1 or BRCA2 mutation and refer those who meet family history criteria to genetic counseling. Such screening requires detailed and accurate family history data, which often goes uncollected during a primary care visit due to time constraints, competing priorities, and lack of awareness on behalf of both patients and providers. In order to address these barriers and promote appropriate genetic counseling referral, we developed a user-centered framework that collects and communicates relevant data in order to prepare patients and their primary care providers for an informed discussion on genetic counseling referral. This paper describes this framework and the underlining data schema that makes it possible.

Assessing Impressions of Community Health Worker Use of Tablet-Based Medication Documentation Software.

Community health workers, an important and emerging role in the evolution of the care delivery system, are uniquely positioned to play a vital role in information gathering and exchange. NewYork-Presbyterian Hospital carried out a feasibility study to assess community health worker use and impressions of a medication documentation application that runs on a tablet. The nine community health workers successfully collected data on 16 patients in the home setting. On average, 10 medications were collected per patient, and the average time to collect the medication data was 1 hour. Key findings from the focus groups included the need for additional training and the desire to use the device to streamline other documentation activities. In general, the software was judged to be suitable for the proposed task and represents a starting point for further use of tools that leverage the community health worker in a team-based workflow.

International perspectives on sharing clinical data with patients.

OBJECTIVE: Engaging patients in their care has become a topic of increasing importance, and enabling patients to have access to their clinical data is a key aspect of such engagement. We investigated, on an international scale, the current state of approaches for providing patients with access to their own clinical information. METHODS: Individuals from 28 countries were invited to participate in a cross-sectional semi-structured interview. Interview questions focused on social and cultural influences that affected patient engagement activities, government support for current and planned initiatives, data ownership models, and technical issues. RESULTS: Interviews were conducted with individuals from 16 countries representing six continents. Respondents reported substantive initiatives for providing information to patients in the majority of countries interviewed. These initiatives were diverse in nature and stage of implementation. DISCUSSION: Enabling patient access to data is occurring on an international scale. There is considerable variability in the level of maturity, the degree of government involvement, the technical infrastructure, and the plans for future development across the world. As informaticians, we are still in the early stages of deploying patient engagement technologies and have yet to identify optimal strategies in this arena. CONCLUSION: Efforts to improve patient access to data are active on a global-scale. There are many open questions about best practices and much can be learned by adopting an international perspective to guide future implementation efforts.

Designing a Clinical Data Warehouse Architecture to Support Quality Improvement Initiatives.

Clinical data warehouses, initially directed towards clinical research or financial analyses, are evolving to support quality improvement efforts, and must now address the quality improvement life cycle. In addition, data that are needed for quality improvement often do not reside in a single database, requiring easier methods to query data across multiple disparate sources. We created a virtual data warehouse at NewYork Presbyterian Hospital that allowed us to bring together data from several source systems throughout the organization. We also created a framework to match the maturity of a data request in the quality improvement life cycle to proper tools needed for each request. As projects progress in the Define, Measure, Analyze, Improve, Control stages of quality improvement, there is a proper matching of resources the data needs at each step. We describe the analysis and design creating a robust model for applying clinical data warehousing to quality improvement.

A Global Analysis of Approaches to Sharing Clinical Data with Patients.

Engaging patients in their care has become a topic of increasing importance, and enabling patients to have access to their clinical data is a key aspect of such engagement. To investigate on an international scale the current state of approaches for providing patients with access to their own clinical information, individuals from 16 countries, across six continents, participated in cross-sectional semi-structured interviews. Interview questions focused on social and cultural influences that affected patient engagement activities, government support for current and planned initiatives, data ownership models, and technical issues. Substantive initiatives for providing information to patients in the majority of countries interviewed are present; however, these initiatives were diverse in nature and stage of implementation. Efforts to improve patient access to data are active on a global-scale. There are many open questions about best practices and much can be learned by adopting an international perspective to guide future implementation efforts.

Recommendations to improve the usability of drug-drug interaction clinical decision support alerts.

OBJECTIVE: To establish preferred strategies for presenting drug-drug interaction (DDI) clinical decision support alerts. MATERIALS AND METHODS: A DDI Clinical Decision Support Conference Series included a workgroup consisting of 24 clinical, usability, and informatics experts representing academia, health information technology (IT) vendors, healthcare organizations, and the Office of the National Coordinator for Health IT. Workgroup members met via web-based meetings 12 times from January 2013 to February 2014, and two in-person meetings to reach consensus on recommendations to improve decision support for DDIs. We addressed three key questions: (1) what, how, where, and when do we display DDI decision support? (2) should presentation of DDI decision support vary by clinicians? and (3) how should effectiveness of DDI decision support be measured? RESULTS: Our recommendations include the consistent use of terminology, visual cues, minimal text, formatting, content, and reporting standards to facilitate usability. All clinicians involved in the medication use process should be able to view DDI alerts and actions by other clinicians. Override rates are common but may not be a good measure of effectiveness. DISCUSSION: Seven core elements should be included with DDI decision support. DDI information should be presented to all clinicians. Finally, in their current form, override rates have limited capability to evaluate alert effectiveness. CONCLUSION: DDI clinical decision support alerts need major improvements. We provide recommendations for healthcare organizations and IT vendors to improve the clinician interface of DDI alerts, with the aim of reducing alert fatigue and improving patient safety.

Identifying homelessness using health information exchange data.

BACKGROUND: Homeless patients experience poor health outcomes and consume a disproportionate amount of health care resources compared with domiciled patients. There is increasing interest in the federal government in providing care coordination for homeless patients, which will require a systematic way of identifying these individuals. OBJECTIVE: We analyzed address data from Healthix, a New York City-based health information exchange, to identify patterns that could indicate homelessness. METHODS: Patients were categorized as likely to be homeless if they registered with the address of a hospital, homeless shelter, place of worship, or an address containing a keyword synonymous with "homelessness." RESULTS: We identified 78,460 out of 7,854,927 Healthix patients (1%) as likely to have been homeless over the study period of September 30, 2008 to July 19, 2013. We found that registration practices for these patients varied widely across sites. CONCLUSIONS: The use of health information exchange data enabled us to identify a large number of patients likely to be homeless and to observe the wide variation in registration practices for homeless patients within and across sites. Consideration of these results may suggest a way to improve the quality of record matching for homeless patients. Validation of these results is necessary to confirm the homeless status of identified individuals. Ultimately, creating a standardized and structured field to record a patient's housing status may be a preferable approach.

Sustainability considerations for health research and analytic data infrastructures.

INTRODUCTION: The United States has made recent large investments in creating data infrastructures to support the important goals of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER), with still more investment planned. These initial investments, while critical to the creation of the infrastructures, are not expected to sustain them much beyond the initial development. To provide the maximum benefit, the infrastructures need to be sustained through innovative financing models while providing value to PCOR and CER researchers. SUSTAINABILITY FACTORS: Based on our experience with creating flexible sustainability strategies (i.e., strategies that are adaptive to the different characteristics and opportunities of a resource or infrastructure), we define specific factors that are important considerations in developing a sustainability strategy. These factors include assets, expansion, complexity, and stakeholders. Each factor is described, with examples of how it is applied. These factors are dimensions of variation in different resources, to which a sustainability strategy should adapt. SUMMARY OBSERVATIONS: We also identify specific important considerations for maintaining an infrastructure, so that the long-term intended benefits can be realized. These observations are presented as lessons learned, to be applied to other sustainability efforts. We define the lessons learned, relating them to the defined sustainability factors as interactions between factors. CONCLUSION AND NEXT STEPS: Using perspectives and experiences from a diverse group of experts, we define broad characteristics of sustainability strategies and important observations, which can vary for different projects. Other descriptions of adaptive, flexible, and successful models of collaboration between stakeholders and data infrastructures can expand this framework by identifying other factors for sustainability, and give more concrete directions on how sustainability can be best achieved.