Clinical Decision Support for Surgery: A Mixed Methods Study on Design and Implementation Perspectives From Urologists.

OBJECTIVE: To assess urologist attitudes toward clinical decision support (CDS) embedded into the electronic health record (EHR) and define design needs to facilitate implementation and impact. With recent advances in big data and artificial intelligence (AI), enthusiasm for personalized, data-driven tools to improve surgical decision-making has grown, but the impact of current tools remains limited. METHODS: A sequential explanatory mixed methods study from 2019 to 2020 was performed. First, survey responses from the 2019 American Urological Association Annual Census evaluated attitudes toward an automatic CDS tool that would display risk/benefit data. This was followed by the purposeful sampling of 25 urologists and qualitative interviews assessing perspectives on CDS impact and design needs. Bivariable, multivariable, and coding-based thematic analysis were applied and integrated. RESULTS: Among a weighted sample of 12,366 practicing urologists, the majority agreed CDS would help decision-making (70.9%, 95% CI 68.7%-73.2%), aid patient counseling (78.5%, 95% CI 76.5%-80.5%), save time (58.1%, 95% CI 55.7%-60.5%), and improve patient outcomes (42.9%, 95% CI 40.5%-45.4%). More years in practice was negatively associated with agreement (P <.001). Urologists described how CDS could bolster evidence-based care, personalized medicine, resource utilization, and patient experience. They also identified multiple implementation barriers and provided suggestions on form, functionality, and visual design to improve usefulness and ease of use. CONCLUSION: Urologists have favorable attitudes toward the potential for clinical decision support in the EHR. Smart design will be critical to ensure effective implementation and impact.

A chatbot for hypertension self-management support: user-centered design, development, and usability testing.

Objectives: Health-related chatbots have demonstrated early promise for improving self-management behaviors but have seldomly been utilized for hypertension. This research focused on the design, development, and usability evaluation of a chatbot for hypertension self-management, called "Medicagent." Materials and Methods: A user-centered design process was used to iteratively design and develop a text-based chatbot using Google Cloud's Dialogflow natural language understanding platform. Then, usability testing sessions were conducted among patients with hypertension. Each session was comprised of: (1) background questionnaires, (2) 10 representative tasks within Medicagent, (3) System Usability Scale (SUS) questionnaire, and (4) a brief semi-structured interview. Sessions were video and audio recorded using Zoom. Qualitative and quantitative analyses were used to assess effectiveness, efficiency, and satisfaction of the chatbot. Results: Participants (n = 10) completed nearly all tasks (98%, 98/100) and spent an average of 18 min (SD = 10 min) interacting with Medicagent. Only 11 (8.6%) utterances were not successfully mapped to an intent. Medicagent achieved a mean SUS score of 78.8/100, which demonstrated acceptable usability. Several participants had difficulties navigating the conversational interface without menu and back buttons, felt additional information would be useful for redirection when utterances were not recognized, and desired a health professional persona within the chatbot. Discussion: The text-based chatbot was viewed favorably for assisting with blood pressure and medication-related tasks and had good usability. Conclusion: Flexibility of interaction styles, handling unrecognized utterances gracefully, and having a credible persona were highlighted as design components that may further enrich the user experience of chatbots for hypertension self-management.

Electronic Health Record Use and Perceptions among Urologic Surgeons.

OBJECTIVE: Electronic health records (EHRs) have become widely adopted with increasing emphasis on improving care delivery. Improvements in surgery may be limited by specialty-specific issues that impact EHR usability and engagement. Accordingly, we examined EHR use and perceptions in urology, a diverse surgical specialty. METHODS: We conducted a national, sequential explanatory mixed methods study. Through the 2019 American Urological Association Census, we surveyed urologic surgeons on EHR use and perceptions and then identified associated characteristics through bivariable and multivariable analyses. Using purposeful sampling, we interviewed 25 urologists and applied coding-based thematic analysis, which was then integrated with survey findings. RESULTS: Among 2,159 practicing urologic surgeons, 2,081 (96.4%) reported using an EHR. In the weighted sample (n = 12,366), over 90% used the EHR for charting, viewing results, and order entry with most using information exchange functions (59.0-79.6%). In contrast, only 35.8% felt the EHR increases clinical efficiency, whereas 43.1% agreed it improves patient care, which related thematically to information management, administrative burden, patient safety, and patient-surgeon interaction. Quantitatively and qualitatively, use and perceptions differed by years in practice and practice type with more use and better perceptions among more recent entrants into the urologic workforce and those in academic/multispecialty practices, who may have earlier EHR exposure, better infrastructure, and more support. CONCLUSION: Despite wide and substantive usage, EHRs engender mixed feelings, especially among longer-practicing surgeons and those in lower-resourced settings (e.g., smaller and private practices). Beyond reducing administrative burden and simplifying information management, efforts to improve care delivery through the EHR should focus on surgeon engagement, particularly in the community, to boost implementation and user experience.

Incidental Radiology Findings on Computed Tomography Studies in Emergency Department Patients: A Systematic Review and Meta-Analysis.

STUDY OBJECTIVE: An incidental finding is defined as a newly discovered mass or lesion detected on imaging performed for an unrelated reason. The identification of an incidental finding may be an opportunity for the early detection of a serious medical condition, including a malignancy. However, little is known about the prevalence of incidental findings in the emergency department (ED) setting and the strategies that can be used to mitigate the risk associated with them in the ED. This study aimed to estimate the overall prevalence of incidental findings and to summarize the currently described measures to mitigate the risks associated with incidental findings. METHODS: On November 22, 2020, a systematic literature search of PubMed, EMBASE, and Scopus was performed for studies that were published in peer-reviewed journals and reported the prevalence of incidental findings in computed tomography (CT) scans in patients in the ED. Patients who received CT scans that included the head, neck, chest, or abdomen/pelvis were included. The study characteristics, overall prevalence of incidental findings, prevalence of incidental findings by body region, and prespecified subgroups were extracted. The criteria used for risk stratification within individual studies were also extracted. Pooled estimates were calculated using a random-effects meta-analysis. RESULTS: A total of 1,385 studies were identified, and 69 studies met the inclusion criteria. The included studies represented 147,763 ED encounters or radiology reports across 16 countries, and 83% of studies were observational, cross-sectional studies. A total of 35 studies (50.7%) were in trauma patients. A large degree of heterogeneity was observed across the included studies. The overall pooled prevalence estimate for any incidental finding was 31.3% (95% confidence interval 24.4% to 39.1%). We found great variation in the methods described to mitigate the risk associated with incidental findings, including a lack of standardized risk stratification, inconsistent documentation practices, and only a small subset of studies describing prospective interventions aimed at improving the recognition and management of incidental findings from the ED. CONCLUSION: In patients in the ED receiving CT scans, incidental findings are commonly encountered across a broad range of ED chief complaints. This review highlights the existence of great heterogeneity in the definitions used to classify incidental findings. Future studies are needed to determine a clinically feasible categorization standard or terminology for commonly encountered incidental findings in the ED setting to standardize classification and documentation.

Electronic patient-reported outcomes monitoring during lung cancer chemotherapy: A nested cohort within the PRO-TECT pragmatic trial (AFT-39).

OBJECTIVES: Patients with lung cancer have high symptom burden and diminished quality of life. Electronic patient-reported outcome (PRO) platforms deliver repeated longitudinal surveys via web or telephone to patients and alert clinicians about concerning symptoms. This study aims to determine feasibility of electronic PRO monitoring in lung cancer patients receiving treatment in community settings. METHODS: Adults receiving treatment for advanced or metastatic lung cancer at 26 community sites were invited to participate in a prospective trial of weekly electronic PRO symptom monitoring for 12 months (NCT03249090). Surveys assessing patients' satisfaction with the electronic PRO system were administered at 3 months. Descriptive statistics were generated for demographics, survey completion rates, symptom occurrence, and provider PRO alert management approaches. Pairwise relationships between symptom items were evaluated using intra-individual repeated-measures correlation coefficients. RESULTS: Lung cancer patients (n = 118) participating in electronic PROs were older (mean 64.4 vs 61.9 years, p = 0.03), had worse performance status (p = 0.002), more comorbidities (p = 0.02), and less technology experience than patients with other cancers. Of delivered weekly PRO surveys over 12 months, 91% were completed. Nearly all (97%) patients reported concerning (i.e., severe or worsening) symptoms during participation, with 33% of surveys including concerning symptoms. Pain was the most frequent and longest lasting symptom and was associated with reduced activity level. More than half of alerts to clinicians for concerning symptoms led to intervention. The majority (87%) would recommend using electronic PRO monitoring to other lung cancer patients. CONCLUSIONS: Remote longitudinal weekly monitoring of patients with lung cancer using validated electronic PRO surveys was feasible in a multicenter, community-based pragmatic study. A high symptom burden specific to lung cancer was detected and clinician outreach in response to alerts was frequent, suggesting electronic PROs may be a beneficial strategy for identifying actionable symptoms and allow opportunities to optimize well-being in this population.

Health information technology to support cancer survivorship care planning: A systematic review.

OBJECTIVE: The study sought to conduct a systematic review to explore the functions utilized by electronic cancer survivorship care planning interventions and assess their effects on patient and provider outcomes. MATERIALS AND METHODS: Based on PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines, studies published from January 2000 to January 2020 were identified in PubMed, CINAHL, EMBASE, PsychINFO, Scopus, Web of Science, and the ACM Digital Library . The search combined terms for cancer, survivorship, care planning, and health information technology (HIT). Eligible studies evaluated the effects of a HIT intervention on usability, knowledge, process, or health-related outcomes. A total of 578 abstracts were reviewed, resulting in 60 manuscripts describing 40 studies. Thematic analyses were used to define meta-themes of system functions, and Fisher's exact tests were used to examine associations between functions and outcomes. RESULTS: Patients were the target end users for 18 interventions, while 12 targeted providers and 10 targeted both groups. Interventions used patient-reported outcomes collection (60%), automated content generation (58%), electronic sharing (40%), persistent engagement (28%), and communication features (20%). Overall, interventions decreased the time to create survivorship care plans (SCPs) and supported care planning knowledge and abilities, but results were mixed for effects on healthcare utilization, SCP sharing, and provoking anxiety. Persistent engagement features were associated with improvements in health or quality-of-life outcomes (17 studies, P = .003). CONCLUSIONS: Features that engaged users persistently over time were associated with better health and quality-of-life outcomes. Most systems have not capitalized on the potential of HIT to share SCPs across a care team and support care coordination.

Information needs and perceptions of chatbots for hypertension medication self-management: a mixed methods study.

OBJECTIVE: Chatbots have potential to deliver interactive self-management interventions but have rarely been studied in the context of hypertension or medication adherence. The objective of this study was to better understand patient information needs and perceptions of chatbots to support hypertension medication self-management. MATERIALS AND METHODS: Mixed methods were used to assess self-management needs and preferences for using chatbots. We purposively sampled adults with hypertension who were prescribed at least one medication. Participants completed questionnaires on sociodemographics, health literacy, self-efficacy, and technology use. Semi-structured interviews were conducted, audio-recorded, and transcribed verbatim. Quantitative data were analyzed using descriptive statistics, and qualitative data were analyzed using applied thematic analysis. RESULTS: Thematic saturation was met after interviewing 15 participants. Analysis revealed curiosity toward chatbots, and most perceived them as humanlike. The majority were interested in using a chatbot to help manage medications, refills, communicate with care teams, and for accountability toward self-care tasks. Despite general enthusiasm, there were concerns with chatbots providing too much information, making demands for lifestyle changes, invading privacy, and usability issues with deployment on smartphones. Those with overall positive perceptions toward chatbots were younger and taking fewer medications. DISCUSSION: Chatbot-related informational needs were consistent with existing self-management research, and many felt chatbots would be valuable if customizable and compatible with patient portals, pharmacies, or health apps. CONCLUSION: Although most were not familiar with chatbots, patients were interested in interacting with them, but this varied. This research informs future design and functionalities of conversational interfaces to support hypertension self-management.

Gender representation in U.S. biomedical informatics leadership and recognition.

OBJECTIVE: This study sought to describe gender representation in leadership and recognition within the U.S. biomedical informatics community. MATERIALS AND METHODS: Data were collected from public websites or provided by American Medical Informatics Association (AMIA) personnel from 2017 to 2019, including gender of membership, directors of academic informatics programs, clinical informatics subspecialty fellowships, AMIA leadership (2014-2019), and AMIA awardees (1993-2019). Differences in gender proportions were calculated using chi-square tests. RESULTS: Men were more often in leadership positions and award recipients (P < .01). Men led 74.7% (n = 71 of 95) of academic informatics programs and 83.3% (n = 35 of 42) of clinical informatics fellowships. Within AMIA, men held 56.8% (n = 1086 of 1913) of leadership roles and received 64.1% (n = 59 of 92) of awards. DISCUSSION: As in other STEM fields, leadership and recognition in biomedical informatics is lower for women. CONCLUSIONS: Quantifying gender inequity should inform data-driven strategies to foster diversity and inclusion. Standardized collection and surveillance of demographic data within biomedical informatics is necessary.

Racial differences in user experiences and perceived value of electronic symptom monitoring in a cohort of black and white bladder and prostate cancer patients.

PURPOSE: Electronic patient-reported outcomes (ePROs) are increasingly being used for symptom monitoring during routine cancer care, but have rarely been evaluated in diverse patient populations. We assessed ePRO user experiences and perceived value among Black and White cancer patients. METHODS: We recruited 30 Black and 49 White bladder and prostate cancer patients from a single institution. Participants reported symptoms using either a web-based or automated telephone interface over 3 months and completed satisfaction surveys and qualitative interviews focused on user experiences and value. Using a narrative mixed methods approach, we evaluated overall and race-specific differences in ePRO user experiences and perceived value. RESULTS: Most participants selected the web-based system, but Blacks were more likely to use the automated telephone-based system than Whites. In satisfaction surveys, Whites more commonly reported ease in understanding and reporting symptoms compared with Blacks. Blacks more often reported that the ePRO system was helpful in facilitating symptom-related discussions with clinicians. During interviews, Blacks described how the ePRO helped them recognize symptoms, while Whites found value in better understanding and tracking symptoms longitudinally. Blacks also expressed preferences for paper-based ePRO options due to perceived ease in better understanding of symptom items. CONCLUSION: Electronic patient-reported outcomes are perceived as valuable for variable reasons by Black and White cancer populations, with greater perceived value for communicating with clinicians reported among Blacks. To optimize equitable uptake of ePROs, oncology practices should offer several ePRO options (e.g., web-based, phone-based), as well as paper-based options, and consider the e-health literacy needs of patients during implementation.

Feasibility and delivery of patient-reported outcomes in clinical practice among racially diverse bladder and prostate cancer patients.

OBJECTIVE: To assess the feasibility of enrollment and collecting patient-reported outcome (PRO) data as part of routine clinical urologic care for bladder and prostate cancer patients and examine overall patterns and racial variations in PRO use and symptom reports over time. SUBJECTS/PATIENTS AND METHODS: We recruited 76 patients (n = 29 Black and n = 47 White) with prostate or bladder cancer at a single, comprehensive cancer center. The majority of prostate cancer patients had intermediate risk (57%) disease and underwent either radiation or prostatectomy. Over half (58%) of bladder cancer patients had muscle invasive disease and underwent cystectomy. Patients were asked to complete PRO symptom surveys using their preferred mode [web- or phone-based interactive voice response (IVR)]. Symptom summary reports were shared with providers during visits. Surveys were completed at 3 time points and assessed urinary, sexual, gastrointestinal, anxiety/depression, and sleep symptoms. Feasibility of enrollment and survey completion were calculated, and linear mixed effects models estimated differences in outcomes by race and time. RESULTS: Sixty three percent of study participants completed all PRO measures at all 3 time points. Black patients were more likely to select IVR as their survey mode (40% vs. 13%, P < 0.05), and less likely to complete all surveys (55% vs. 74%, P = 0.13). Patients using IVR were also less likely to complete all surveys (41% vs. 69%, P = 0.046). CONCLUSIONS: Reported preferences for survey mode and completion rates differ by race, which may influence survey completion rates and highlight potential obstacles for equitable implementation of PROs into clinical care.

From Patient Engagement to Precision Oncology: Leveraging Informatics to Advance Cancer Care.

OBJECTIVES: Conduct a survey of the literature for advancements in cancer informatics over the last three years in three specific areas where there has been unprecedented growth: 1) digital health; 2) machine learning; and 3) precision oncology. We also highlight the ethical implications and future opportunities within each area. METHODS: A search was conducted over a three-year period in two electronic databases (PubMed, Google Scholar) to identify peer-reviewed articles and conference proceedings. Search terms included variations of the following: neoplasms[MeSH], informatics[MeSH], cancer, oncology, clinical cancer informatics, medical cancer informatics. The search returned too many articles for practical review (23,994 from PubMed and 23,100 from Google Scholar). Thus, we conducted searches of key PubMed-indexed informatics journals and proceedings. We further limited our search to manuscripts that demonstrated a clear focus on clinical or translational cancer informatics. Manuscripts were then selected based on their methodological rigor, scientific impact, innovation, and contribution towards cancer informatics as a field or on their impact on cancer care and research. RESULTS: Key developments and opportunities in cancer informatics research in the areas of digital health, machine learning, and precision oncology were summarized. CONCLUSION: While there are numerous innovations in the field of cancer informatics to advance prevention and clinical care, considerable challenges remain related to data sharing and privacy, digital accessibility, and algorithm biases and interpretation. The implementation and application of these findings in cancer care necessitates further consideration and research.

Citizen science to further precision medicine: from vision to implementation.

The active involvement of citizen scientists in setting research agendas, partnering with academic investigators to conduct research, analyzing and disseminating results, and implementing learnings from research can improve both processes and outcomes. Adopting a citizen science approach to the practice of precision medicine in clinical care and research will require healthcare providers, researchers, and institutions to address a number of technical, organizational, and citizen scientist collaboration issues. Some changes can be made with relative ease, while others will necessitate cultural shifts, redistribution of power, recommitment to shared goals, and improved communication. This perspective, based on a workshop held at the 2018 AMIA Annual Symposium, identifies current barriers and needed changes to facilitate broad adoption of a citizen science-based approach in healthcare.

Performance Measures Based on How Adults With Cancer Feel and Function: Stakeholder Recommendations and Feasibility Testing in Six Cancer Centers.

PURPOSE: Patient-reported outcome measures (PROMs) that assess how patients feel and function have potential for evaluating quality of care. Stakeholder recommendations for PRO-based performance measures (PMs) were elicited, and feasibility testing was conducted at six cancer centers. METHODS: Interviews were conducted with 124 stakeholders to determine priority symptoms and risk adjustment variables for PRO-PMs and perceived acceptability. Stakeholders included patients and advocates, caregivers, clinicians, administrators, and thought leaders. Feasibility testing was conducted in six cancer centers. Patients completed PROMs at home 5-15 days into a chemotherapy cycle. Feasibility was operationalized as ≥ 75% completed PROMs and ≥ 75% patient acceptability. RESULTS: Stakeholder priority PRO-PMs for systemic therapy were GI symptoms (diarrhea, constipation, nausea, vomiting), depression/anxiety, pain, insomnia, fatigue, dyspnea, physical function, and neuropathy. Recommended risk adjusters included demographics, insurance type, cancer type, comorbidities, emetic risk, and difficulty paying bills. In feasibility testing, 653 patients enrolled (approximately 110 per site), and 607 (93%) completed PROMs, which indicated high feasibility for home collection. The majority of patients (470 of 607; 77%) completed PROMs without a reminder call, and 137 (23%) of 607 completed them after a reminder call. Most patients (72%) completed PROMs through web, 17% paper, or 2% interactive voice response (automated call that verbally asked patient questions). For acceptability, > 95% of patients found PROM items to be easy to understand and complete. CONCLUSION: Clinicians, patients, and other stakeholders agree that PMs that are based on how patients feel and function would be an important addition to quality measurement. This study also shows that PRO-PMs can be feasibly captured at home during systemic therapy and are acceptable to patients. PRO-PMs may add value to the portfolio of PMs as oncology transitions from fee-for-service payment models to performance-based care that emphasizes outcome measures.

Conversational Agents for Chronic Disease Self-Management: A Systematic Review.

We conducted a systematic literature review to assess how conversational agents have been used to facilitate chronic disease self-management. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) framework was used. Literature was searched across five databases, and we included full-text articles that contained primary research findings for text-based conversational agents focused on self-management for chronic diseases in adults. 1,606 studies were identified, and 12 met inclusion criteria. Outcomes were largely focused on usability of conversational agents, and participants mostly reported positive attitudes with some concerns related to privacy and shallow content. In several studies, there were improvements on the Patient Health Questionnaire (p<0.05), Generalized Anxiety Disorder Scale (p=0.004), Perceived Stress Scale (p=0.048), Flourishing Scale (p=0.032), and Overall Anxiety Severity and Impairment Scale (p<0.05). There is early evidence that suggests conversational agents are acceptable, usable, and may be effective in supporting self-management, particularly for mental health.

Development of the influence, motivation, and patient activation in diabetes (IMPACT-D™) measure.

AIMS: We sought to create a new research and clinical instrument -the Influence and Motivation for Patient ACTivation in Diabetes care (IMPACT-D™) - to measure the degree to which patients with type 2 diabetes (T2DM) value health and believe they can influence it. METHODS: Candidate items were generated via a literature review, expert opinion, and qualitative interviews and focus groups with T2DM patients in Chicago, IL and Chapel Hill, NC. Psychometric testing guided by item response theory was conducted among an online panel of 500 English-speaking adults with T2DM. Differential item functioning analyses evaluated item performance across key participant characteristics. To determine construct validity, IMPACT-D™ scores were compared to other general measures of personality and patient activation. A second study among 300 patients recruited from two internal medicine clinics further assessed associations between the IMPACT-D™ and health outcomes. Cognitive interviews confirmed patient understanding of IMPACT-D™ items and instructions. RESULTS: Exploratory factor analyses revealed a single-factor solution that included 6 items. The IMPACT-D™ demonstrated adequate reliability (α = 0.72) and moderate construct validity with patient activation (r = 0.51, p < 0.001) and personality-conscientiousness subscales (r = 0.29, p < 0.001). Higher scores on the IMPACT-D™ were associated with better physical health (r = 0.17, p = 0.003) and lower severity of depressive (r = -0.35, p < 0.001) and anxiety (r = -0.28, p < 0.001) symptoms. There were no significant differences by blood pressure (r = -0.0021, p = 0.9) or haemoglobin A1c (r = -0.069p = 0.2). CONCLUSIONS: The IMPACT-D holds potential for use in both clinical care and research applications. Future studies should evaluate how to best operationalize its use for both settings.

Electronic Health Record-Based Strategy to Promote Medication Adherence Among Patients With Diabetes: Longitudinal Observational Study.

BACKGROUND: Poor medication adherence is common; however, few mechanisms exist in clinical practice to monitor how patients take medications in outpatient settings. OBJECTIVE: This study aimed to pilot test the Electronic Medication Complete Communication (EMC2) strategy, a low-cost, sustainable approach that uses functionalities within the electronic health record to promote outpatient medication adherence and safety. METHODS: The EMC2 strategy was implemented in 2 academic practices for 14 higher-risk diabetes medications. The strategy included: (1) clinical decision support alerts to prompt provider counseling on medication risks, (2) low-literacy medication summaries for patients, (3) a portal-based questionnaire to monitor outpatient medication use, and (4) clinical outreach for identified concerns. We recruited adult patients with diabetes who were prescribed a higher-risk diabetes medication. Participants completed baseline and 2-week interviews to assess receipt of, and satisfaction with, intervention components. RESULTS: A total of 100 patients were enrolled; 90 completed the 2-week interview. Patients were racially diverse, 30.0% (30/100) had a high school education or less, and 40.0% (40/100) had limited literacy skills. About a quarter (28/100) did not have a portal account; socioeconomic disparities were noted in account ownership by income and education. Among patients with a portal account, 58% (42/72) completed the questionnaire; 21 of the 42 patients reported concerns warranting clinical follow-up. Of these, 17 were contacted by the clinic or had their issue resolved within 24 hours. Most patients (33/38, 89%) who completed the portal questionnaire and follow-up interview reported high levels of satisfaction (score of 8 or greater on a scale of 1-10). CONCLUSIONS: Findings suggest that the EMC2 strategy can be reliably implemented and delivered to patients, with high levels of satisfaction. Disparities in portal use may restrict intervention reach. Although the EMC2 strategy can be implemented with minimal impact on clinic workflow, future trials are needed to evaluate its effectiveness to promote adherence and safety.

Patient free text reporting of symptomatic adverse events in cancer clinical research using the National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).

OBJECTIVE: The study sought to describe patient-entered supplemental information on symptomatic adverse events (AEs) in cancer clinical research reported via a National Cancer Institute software system and examine the feasibility of mapping these entries to established terminologies. MATERIALS AND METHODS: Patients in 3 multicenter trials electronically completed surveys during cancer treatment. Each survey included a prespecified subset of items from the National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Upon completion of the survey items, patients could add supplemental symptomatic AE information in a free text box. As patients typed into the box, structured dropdown terms could be selected from the PRO-CTCAE item library or Medical Dictionary for Regulatory Activities (MedDRA), or patients could type unstructured free text for submission. RESULTS: Data were pooled from 1760 participants (48% women; 78% White) who completed 8892 surveys, of which 2387 (26.8%) included supplemental symptomatic AE information. Overall, 1024 (58%) patients entered supplemental information at least once, with an average of 2.3 per patient per study. This encompassed 1474 of 8892 (16.6%) dropdowns and 913 of 8892 (10.3%) unstructured free text entries. One-third of the unstructured free text entries (32%) could be mapped post hoc to a PRO-CTCAE term and 68% to a MedDRA term. DISCUSSION: Participants frequently added supplemental information beyond study-specific survey items. Almost half selected a structured dropdown term, although many opted to submit unstructured free text entries. Most free text entries could be mapped post hoc to PRO-CTCAE or MedDRA terms, suggesting opportunities to enhance the system to perform real-time mapping for AE reporting. CONCLUSIONS: Patient reporting of symptomatic AEs using a text box functionality with mapping to existing terminologies is both feasible and informative.

Health Tracking and Information Sharing in the Patient-Centered Era: A Health Information National Trends Survey (HINTS) Study.

We examined the current state of digital health tracking and information sharing with health professionals among patients with chronic conditions using data from the National Cancer Institute's 2018 Health Information National Trends Survey (HINTS). Descriptive statistics were used to examine the characteristics of health tracking and information sharing, Chi-squared tests were used to compare across groups, and multivariate logistic regression models were used to control for covariates. Between 17.4-37.6% of respondents reported sharing information with a health professional through either e-mail, monitoring device, text message, or online medical record message. There were sociodemographic differences across health tracking and information sharing modalities, and patients with chronic conditions disproportionately lacked Internet access, a basic cell phone, smartphone, or tablet compared to those without chronic conditions (p<0.05). This suggests there are sociodemographic and technology-based disparities for health tracking and information sharing for patients with chronic conditions.

Opportunities and challenges to advance the use of electronic patient-reported outcomes in clinical care: a report from AMIA workshop proceedings.

Despite the demonstrated value of patient-centered care, health systems have been slow to integrate the patient's voice into care delivery through patient-reported outcomes (PROs) with electronic tools. This is due in part to the complex interplay of technology, workflow, and human factors that shape the success of electronic PROs (ePROs) use. The 2018 American Medical Informatics Association Annual Symposium served as the setting for a half-day interactive workshop with diverse stakeholders to discuss proposed best practices for the planning, design, deployment, and evaluation of ePROs. We provide this collective commentary that synthesizes participant feedback regarding critical challenges that prohibit the scale and spread of ePROs across healthcare delivery systems, including governance and leadership, workflow and human factors, informatics, and data science. In order to realize the promise of ePROs at scale, adaptable approaches are critical to balance the needs of individual users with health systems at large.

Health and Fitness Apps for Hands-Free Voice-Activated Assistants: Content Analysis.

BACKGROUND: Hands-free voice-activated assistants and their associated devices have recently gained popularity with the release of commercial products, including Amazon Alexa and Google Assistant. Voice-activated assistants have many potential use cases in healthcare including education, health tracking and monitoring, and assistance with locating health providers. However, little is known about the types of health and fitness apps available for voice-activated assistants as it is an emerging market. OBJECTIVE: This review aimed to examine the characteristics of health and fitness apps for commercially available, hands-free voice-activated assistants, including Amazon Alexa and Google Assistant. METHODS: Amazon Alexa Skills Store and Google Assistant app were searched to find voice-activated assistant apps designated by vendors as health and fitness apps. Information was extracted for each app including name, description, vendor, vendor rating, user reviews and ratings, cost, developer and security policies, and the ability to pair with a smartphone app and website and device. Using a codebook, two reviewers independently coded each app using the vendor's descriptions and the app name into one or more health and fitness, intended age group, and target audience categories. A third reviewer adjudicated coding disagreements until consensus was reached. Descriptive statistics were used to summarize app characteristics. RESULTS: Overall, 309 apps were reviewed; health education apps (87) were the most commonly occurring, followed by fitness and training (72), nutrition (33), brain training and games (31), and health monitoring (25). Diet and calorie tracking apps were infrequent. Apps were mostly targeted towards adults and general audiences with few specifically geared towards patients, caregivers, or medical professionals. Most apps were free to enable or use and 18.1% (56/309) could be paired with a smartphone app and website and device; 30.7% (95/309) of vendors provided privacy policies; and 22.3% (69/309) provided terms of use. The majority (36/42, 85.7%) of Amazon Alexa apps were rated by the vendor as mature or guidance suggested, which were geared towards adults only. When there was a user rating available, apps had a wide range of ratings from 1 to 5 stars with a mean of 2.97. Google Assistant apps did not have user reviews available, whereas most of Amazon Alexa apps had at least 1-9 reviews available. CONCLUSIONS: The emerging market of health and fitness apps for voice-activated assistants is still nascent and mainly focused on health education and fitness. Voice-activated assistant apps had a wide range of content areas but many published in the health and fitness categories did not actually have a clear health or fitness focus. This may, in part, be due to Amazon and Google policies, which place restrictions on the delivery of care or direct recording of health data. As in the mobile app market, the content and functionalities may evolve to meet growing demands for self-monitoring and disease management.