"Hey Siri, Help Me Take Care of My Child": A Feasibility Study With Caregivers of Children With Special Healthcare Needs Using Voice Interaction and Automatic Speech Recognition in Remote Care Management.

About 23% of households in the United States have at least one child who has special healthcare needs. As most care activities occur at home, there is often a disconnect and lack of communication between families, home care nurses, and healthcare providers. Digital health technologies may help bridge this gap. We conducted a pre-post study with a voice-enabled medical note taking (diary) app (SpeakHealth) in a real world setting with caregivers (parents, family members) of children with special healthcare needs (CSHCN) to understand feasibility of voice interaction and automatic speech recognition (ASR) for medical note taking at home. In total, 41 parents of CSHCN were recruited. Participants completed a pre-study survey collecting demographic details, technology and care management preferences. Out of 41, 24 participants completed the study, using the app for 2 weeks and completing an exit survey. The app facilitated caregiver note-taking using voice interaction and ASR. An exit survey was conducted to collect feedback on technology adoption and changes in technology preferences in care management. We assessed the feasibility of the app by descriptively analyzing survey responses and user data following the key focus areas of acceptability, demand, implementation and integration, adaptation and expansion. In addition, perceived effectiveness of the app was assessed by comparing perceived changes in mobile app preferences among participants. In addition, the voice data, notes, and transcriptions were descriptively analyzed for understanding the feasibility of the app. The majority of the recruited parents were 35-44 years old (22, 53.7%), part of a two-parent household (30, 73.2%), white (37, 90.2%), had more than one child (31, 75.6%), lived in Ohio (37, 90.2%), used mobile health apps, mobile note taking apps or calendar apps (28, 68.3%) and patient portal apps (22, 53.7%) to track symptoms and health events at home. Caregivers had experience with voice technology as well (32, 78%). Among those completed the post-study survey (in Likert Scale 1-5), ~80% of the caregivers agreed or strongly agreed that using the app would enhance their performance in completing tasks (perceived usefulness; mean = 3.4, SD = 0.8), the app is free of effort (perceived ease of use; mean = 3.2, SD = 0.9), and they would use the app in the future (behavioral intention; mean = 3.1, SD = 0.9). In total, 88 voice interactive patient notes were generated with the majority of the voice recordings being less than 20 s in length (66%). Most noted symptoms and conditions, medications, treatment and therapies, and patient behaviors. More than half of the caregivers reported that voice interaction with the app and using transcribed notes positively changed their preference of technology to use and methods for tracking symptoms and health events at home. Our findings suggested that voice interaction and ASR use in mobile apps are feasible and effective in keeping track of symptoms and health events at home. Future work is suggested toward using integrated and intelligent systems with voice interactions with broader populations.

Sezgin E ，Oiler B ，Abbott B ，Noritz G ，Huang Y ... -  《Frontiers in Public Health》

Feasibility of a Voice-Enabled Medical Diary App (SpeakHealth) for Caregivers of Children With Special Health Care Needs and Health Care Providers: Mixed Methods Study.

Children with special health care needs (CSHCN) require more than the usual care management and coordination efforts from caregivers and health care providers (HCPs). Health information and communication technologies can potentially facilitate these efforts to increase the quality of care received by CSHCN. In this study, we aim to assess the feasibility of a voice-enabled medical diary app (SpeakHealth) by investigating its potential use among caregivers and HCPs. Following a mixed methods approach, caregivers of CSHCN were interviewed (n=10) and surveyed (n=86) about their care management and communication technology use. Only interviewed participants were introduced to the SpeakHealth app prototype, and they tested the app during the interview session. In addition, we interviewed complex care HCPs (n=15) to understand their perception of the value of a home medical diary such as the SpeakHealth app. Quantitative data were analyzed using descriptive statistics and correlational analyses. Theoretical thematic analysis was used to analyze qualitative data. The survey results indicated a positive attitude toward voice-enabled technology and features; however, there was no strong correlation among the measured items. The caregivers identified communication, information sharing, tracking medication, and appointments as fairly and highly important features of the app. Qualitative analysis revealed the following two overarching themes: enablers and barriers in care communication and enablers and barriers in communication technologies. The subthemes included parent roles, care communication technologies, and challenges. HCPs found the SpeakHealth app to be a promising tool for timely information collection that could be available for sharing information with the health system. Overall, the findings demonstrated a variety of needs and challenges for caregivers of CSHCN and opportunities for voice-enabled, interactive medical diary apps in care management and coordination. Caregivers fundamentally look for better information sharing and communication with HCPs. Health care and communication technologies can potentially improve care communication and coordination in addressing the patient and caregiver needs. The perspectives of caregivers and providers suggested both benefits and challenges in using the SpeakHealth app for medical note-taking and tracking health events at home. Our findings could inform researchers and developers about the potential development and use of a voice-enabled medical diary app.

Sezgin E ，Noritz G ，Lin S ，Huang Y ... -  《-》

Extracting Medical Information From Free-Text and Unstructured Patient-Generated Health Data Using Natural Language Processing Methods: Feasibility Study With Real-world Data.

Patient-generated health data (PGHD) captured via smart devices or digital health technologies can reflect an individual health journey. PGHD enables tracking and monitoring of personal health conditions, symptoms, and medications out of the clinic, which is crucial for self-care and shared clinical decisions. In addition to self-reported measures and structured PGHD (eg, self-screening, sensor-based biometric data), free-text and unstructured PGHD (eg, patient care note, medical diary) can provide a broader view of a patient's journey and health condition. Natural language processing (NLP) is used to process and analyze unstructured data to create meaningful summaries and insights, showing promise to improve the utilization of PGHD. Our aim is to understand and demonstrate the feasibility of an NLP pipeline to extract medication and symptom information from real-world patient and caregiver data. We report a secondary data analysis, using a data set collected from 24 parents of children with special health care needs (CSHCN) who were recruited via a nonrandom sampling approach. Participants used a voice-interactive app for 2 weeks, generating free-text patient notes (audio transcription or text entry). We built an NLP pipeline using a zero-shot approach (adaptive to low-resource settings). We used named entity recognition (NER) and medical ontologies (RXNorm and SNOMED CT [Systematized Nomenclature of Medicine Clinical Terms]) to identify medication and symptoms. Sentence-level dependency parse trees and part-of-speech tags were used to extract additional entity information using the syntactic properties of a note. We assessed the data; evaluated the pipeline with the patient notes; and reported the precision, recall, and F1 scores. In total, 87 patient notes are included (audio transcriptions n=78 and text entries n=9) from 24 parents who have at least one CSHCN. The participants were between the ages of 26 and 59 years. The majority were White (n=22, 92%), had more than one child (n=16, 67%), lived in Ohio (n=22, 92%), had mid- or upper-mid household income (n=15, 62.5%), and had higher level education (n=24, 58%). Out of 87 notes, 30 were drug and medication related, and 46 were symptom related. We captured medication instances (medication, unit, quantity, and date) and symptoms satisfactorily (precision >0.65, recall >0.77, F1>0.72). These results indicate the potential when using NER and dependency parsing through an NLP pipeline on information extraction from unstructured PGHD. The proposed NLP pipeline was found to be feasible for use with real-world unstructured PGHD to accomplish medication and symptom extraction. Unstructured PGHD can be leveraged to inform clinical decision-making, remote monitoring, and self-care including medical adherence and chronic disease management. With customizable information extraction methods using NER and medical ontologies, NLP models can feasibly extract a broad range of clinical information from unstructured PGHD in low-resource settings (eg, a limited number of patient notes or training data).

Sezgin E ，Hussain SA ，Rust S ，Huang Y ... -  《-》

"They Can't Believe They're a Tiger": Insights from pediatric speech-language pathologist mobile app users and app designers.

Children with communication disorders experience difficulty in one or more areas of articulation and speech, language, fluency, voice and social communication, and they work with speech-language pathologists (SLPs) to improve their communication. With the rise of adoption and use for mobile applications among special education and healthcare service providers, SLPs also have implemented, and for some, contributed to the design of, mobile applications (apps) during clinical practice. However, how these mobile apps are designed and implemented for clinicians to facilitate their clients' communication and learning experiences during therapy remains underinvestigated. This qualitative research study investigated how mobile apps were designed for clinicians to target assessment and intervention goals. Additionally, it focused on how clinicians adopted these apps while integrating therapy techniques to facilitate their clients' learning. Informed by the Research, Practice, and Design for iPad Apps (iRPD) framework and the Consolidated Framework for Implementation Research (CFIR), semi-structured interviews were conducted with 37 licensed pediatric SLPs, including 23 SLPs who have used apps and 14 SLPs who have contributed to the design of their own mobile apps. Two rounds of qualitative coding via template analysis and thematic analysis were then used to analyse client and clinician characteristics, clinical practice, therapy tools, app characteristics, influential factors and app design and use recommendations. Results showed SLPs utilise different genres of assistive, educational and recreational game apps to support children's communication development when working with children who have diverse disorders and therapy needs across different age groups. SLPs who have designed their own apps emphasised the importance of following evidence-based practice, well-researched teaching methods and learning theories. Additionally, multiple financial, sociocultural, political and ethical factors contributed to the design, adoption and implementation of mobile apps during services. By understanding the clinician's app use practices situated in various therapy activities and techniques, we specified a list of design recommendations for app designers who are interested in creating mobile apps for supporting children's speech and language development. By bringing insights from both clinical practitioners as well as those with additional technical design backgrounds, this study contributes to the understanding of clinical practice needs and strategies and will lead to the most optimal app design and adoption practice to support the well-being of children with communication disorders. What is already known on the subject Speech language pathologist (SLPs) implement mobile apps for clients with diverse therapy needs, and their app adoption and use are influenced by multifaceted factors. Although prior studies have reported SLPs' mobile app use, additional information is still needed. For example, the research literature does not include how specific technology is used during therapy practice, or specific details about challenges and needs in implementing and utilising the technology. Additional research also needs to include influential factors (e.g., financial, sociocultural, political, ethical) that are considered when selecting, implementing, assessing and designing an app. The lack of research in these areas directly affects the understanding of clinical mobile technology practices and further hinders clinicians' abilities to advocate for better clinical and design decisions towards identifying and implementing effective mobile apps that facilitate children's communication. What this study adds to existing knowledge This qualitative study is the first known empirical research that interviewed pediatric speech-language pathologists who have used and designed mobile apps for children who receive speech-language therapy across different clinical settings. By investigating experiences from clinician stakeholders to illustrate a holistic overview of app design and development to deployment, this study reported finding on (1) how clinicians use mobile apps to help children to participate in different therapy activities, and (2) a list of recommended design and development guidelines that informs the design and use of mobile apps that best support and motivate children to engage in therapy. What are the potential or actual clinical implications of this work? This study disseminates clinician-reported practices of app design and use with pediatric clients across different speech-language disorders, and identifies gaps and needs for clinicians and researchers who are interested in understanding the role of mobile technology in relationship to human communication and interaction. Additionally, the paper demonstrates that SLPs have instrumental roles rather than passive users in influencing the design and implementation of different genres of mobile apps through evidence-based clinical practice, and call for partnerships across clinicians, special educators and technologists to support children's communication development.

Du Y ，Lubniewski K ，Price L ，Breslin G ，Thomson P ，Jinadasa N ，Soni N ... -  《-》

Outcomes of End-User Testing of a Care Coordination Mobile App With Families of Children With Special Health Care Needs: Simulation Study.

Care for children with special health care needs relies on a network of providers who work to address the medical, behavioral, developmental, educational, social, and economic needs of the child and their family. Family-directed, manually created visual depictions of care team composition (ie, care mapping) and detailed note-taking curated by caregivers (eg, care binders) have been shown to enhance care coordination for families of these children, but they are difficult to implement in clinical settings owing to a lack of integration with electronic health records and limited visibility of family-generated insights for care providers. Caremap is an electronic health record-integrated digital personal health record mobile app designed to integrate the benefits of care mapping and care binders. Currently, there is sparse literature describing end-user participation in the co-design of digital health tools. In this paper, we describe a project that evaluated the usability and proof of concept of the Caremap app through end-user simulation. This study aimed to conduct proof-of-concept testing of the Caremap app to coordinate care for children with special health care needs and explore early end-user engagement in simulation testing. The specific aims included engaging end users in app co-design via app simulation, evaluating the usability of the app using validated measures, and exploring user perspectives on how to make further improvements to the app. Caregivers of children with special health care needs were recruited to participate in a simulation exercise using Caremap to coordinate care for a simulated case of a child with complex medical and behavioral needs. Participants completed a postsimulation questionnaire adapted from 2 validated surveys: the Pediatric Integrated Care Survey (PICS) and the user version of the Mobile Application Rating Scale (uMARS). A key informant interview was also conducted with a liaison to Spanish-speaking families regarding app accessibility for non-English-speaking users. A Caremap simulation was successfully developed in partnership with families of children with special health care needs. Overall, 38 families recruited from 19 different US states participated in the simulation exercise and completed the survey. The average rating for the survey adapted from the PICS was 4.1 (SD 0.82) out of 5, and the average rating for the adapted uMARS survey was 4 (SD 0.83) out of 5. The highest-rated app feature was the ability to track progress toward short-term, patient- and family-defined care goals. Internet-based simulation successfully facilitated end-user engagement and feedback for a digital health care coordination app for families of children with special health care needs. The families who completed simulation with Caremap rated it highly across several domains related to care coordination. The simulation study results elucidated key areas for improvement that translated into actionable next steps in app development.

Wong W ，Ming D ，Pateras S ，Fee CH ，Coleman C ，Docktor M ，Shah N ，Antonelli R ... -  《-》