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Patient portal messages often relate to specific clinical phenomena (e.g., patients undergoing treatment for breast cancer) and, as a result, have received increasing attention in biomedical research. These messages require natural language processing and, while word embedding models, such as word2vec, have the potential to extract meaningful signals from text, they are not readily applicable to patient portal messages. This is because embedding models typically require millions of training samples to sufficiently represent semantics, while the volume of patient portal messages associated with a particular clinical phenomenon is often relatively small. We introduce a novel adaptation of the word2vec model, PK-word2vec (where PK stands for prior knowledge), for small-scale messages. PK-word2vec incorporates the most similar terms for medical words (including problems, treatments, and tests) and non-medical words from two pre-trained embedding models as prior knowledge to improve the training process. We applied PK-word2vec in a case study of patient portal messages in the Vanderbilt University Medical Center electric health record system sent by patients diagnosed with breast cancer from December 2004 to November 2017. We evaluated the model through a set of 1000 tasks, each of which compared the relevance of a given word to a group of the five most similar words generated by PK-word2vec and a group of the five most similar words generated by the standard word2vec model. We recruited 200 Amazon Mechanical Turk (AMT) workers and 7 medical students to perform the tasks. The dataset was composed of 1389 patient records and included 137,554 messages with 10,683 unique words. Prior knowledge was available for 7981 non-medical and 1116 medical words. In over 90% of the tasks, both reviewers indicated PK-word2vec generated more similar words than standard word2vec (p = 0.01).The difference in the evaluation by AMT workers versus medical students was negligible for all comparisons of tasks' choices between the two groups of reviewers ( p = 0.774 under a paired t-test). PK-word2vec can effectively learn word representations from a small message corpus, marking a significant advancement in processing patient portal messages.
Subject(s)
Breast Neoplasms , Natural Language Processing , Patient Portals , Humans , Female , Semantics , Electronic Health RecordsABSTRACT
Background: Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users. Objective: We aimed to investigate the perceptions and utilization of online peer support through a survey. Methods: Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers' experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer's Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer's Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support. Results: We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants' belief in the value of online peer support (P=.006). Moreover, of the 40 non-online community caregivers, 33 (83%) had a belief score above 24-the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information-searching skills (9/140, 6.4%). Conclusions: Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information-searching skills.
Subject(s)
Caregivers , Dementia , Peer Group , Social Support , Humans , Caregivers/psychology , Female , Dementia/nursing , Dementia/psychology , Male , Surveys and Questionnaires , Middle Aged , Aged , Internet , AdultABSTRACT
Background: The launch of the Chat Generative Pre-trained Transformer (ChatGPT) in November 2022 has attracted public attention and academic interest to large language models (LLMs), facilitating the emergence of many other innovative LLMs. These LLMs have been applied in various fields, including healthcare. Numerous studies have since been conducted regarding how to employ state-of-the-art LLMs in health-related scenarios to assist patients, doctors, and public health administrators. Objective: This review aims to summarize the applications and concerns of applying conversational LLMs in healthcare and provide an agenda for future research on LLMs in healthcare. Methods: We utilized PubMed, ACM, and IEEE digital libraries as primary sources for this review. We followed the guidance of Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRIMSA) to screen and select peer-reviewed research articles that (1) were related to both healthcare applications and conversational LLMs and (2) were published before September 1st, 2023, the date when we started paper collection and screening. We investigated these papers and classified them according to their applications and concerns. Results: Our search initially identified 820 papers according to targeted keywords, out of which 65 papers met our criteria and were included in the review. The most popular conversational LLM was ChatGPT from OpenAI (60), followed by Bard from Google (1), Large Language Model Meta AI (LLaMA) from Meta (1), and other LLMs (5). These papers were classified into four categories in terms of their applications: 1) summarization, 2) medical knowledge inquiry, 3) prediction, and 4) administration, and four categories of concerns: 1) reliability, 2) bias, 3) privacy, and 4) public acceptability. There are 49 (75%) research papers using LLMs for summarization and/or medical knowledge inquiry, and 58 (89%) research papers expressing concerns about reliability and/or bias. We found that conversational LLMs exhibit promising results in summarization and providing medical knowledge to patients with a relatively high accuracy. However, conversational LLMs like ChatGPT are not able to provide reliable answers to complex health-related tasks that require specialized domain expertise. Additionally, no experiments in our reviewed papers have been conducted to thoughtfully examine how conversational LLMs lead to bias or privacy issues in healthcare research. Conclusions: Future studies should focus on improving the reliability of LLM applications in complex health-related tasks, as well as investigating the mechanisms of how LLM applications brought bias and privacy issues. Considering the vast accessibility of LLMs, legal, social, and technical efforts are all needed to address concerns about LLMs to promote, improve, and regularize the application of LLMs in healthcare.
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Background: Patient portal messages often relate to specific clinical phenomena (e.g., patients undergoing treatment for breast cancer) and, as a result, have received increasing attention in biomedical research. These messages require natural language processing and, while word embedding models, such as word2vec, have the potential to extract meaningful signals from text, they are not readily applicable to patient portal messages. This is because embedding models typically require millions of training samples to sufficiently represent semantics, while the volume of patient portal messages associated with a particular clinical phenomenon is often relatively small. Objective: We introduce a novel adaptation of the word2vec model, PK-word2vec, for small-scale messages. Methods: PK-word2vec incorporates the most similar terms for medical words (including problems, treatments, and tests) and non-medical words from two pre-trained embedding models as prior knowledge to improve the training process. We applied PK-word2vec on patient portal messages in the Vanderbilt University Medical Center electric health record system sent by patients diagnosed with breast cancer from December 2004 to November 2017. We evaluated the model through a set of 1000 tasks, each of which compared the relevance of a given word to a group of the five most similar words generated by PK-word2vec and a group of the five most similar words generated by the standard word2vec model. We recruited 200 Amazon Mechanical Turk (AMT) workers and 7 medical students to perform the tasks. Results: The dataset was composed of 1,389 patient records and included 137,554 messages with 10,683 unique words. Prior knowledge was available for 7,981 non-medical and 1,116 medical words. In over 90% of the tasks, both reviewers indicated PK-word2vec generated more similar words than standard word2vec (p=0.01).The difference in the evaluation by AMT workers versus medical students was negligible for all comparisons of tasks' choices between the two groups of reviewers (p = 0.774 under a paired t-test). Conclusions: PK-word2vec can effectively learn word representations from a small message corpus, marking a significant advancement in processing patient portal messages.
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BACKGROUND: Alzheimer disease or related dementias (ADRD) are severe neurological disorders that impair the thinking and memory skills of older adults. Most persons living with dementia receive care at home from their family members or other unpaid informal caregivers; this results in significant mental, physical, and financial challenges for these caregivers. To combat these challenges, many informal ADRD caregivers seek social support in online environments. Although research examining online caregiving discussions is growing, few investigations have distinguished caregivers according to their kin relationships with persons living with dementias. Various studies have suggested that caregivers in different relationships experience distinct caregiving challenges and support needs. OBJECTIVE: This study aims to examine and compare the online behaviors of adult-child and spousal caregivers, the 2 largest groups of informal ADRD caregivers, in an open online community. METHODS: We collected posts from ALZConnected, an online community managed by the Alzheimer's Association. To gain insights into online behaviors, we first applied structural topic modeling to identify topics and topic prevalence between adult-child and spousal caregivers. Next, we applied VADER (Valence Aware Dictionary for Sentiment Reasoning) and LIWC (Linguistic Inquiry and Word Count) to evaluate sentiment changes in the online posts over time for both types of caregivers. We further built machine learning models to distinguish the posts of each caregiver type and evaluated them in terms of precision, recall, F1-score, and area under the precision-recall curve. Finally, we applied the best prediction model to compare the temporal trend of relationship-predicting capacities in posts between the 2 types of caregivers. RESULTS: Our analysis showed that the number of posts from both types of caregivers followed a long-tailed distribution, indicating that most caregivers in this online community were infrequent users. In comparison with adult-child caregivers, spousal caregivers tended to be more active in the community, publishing more posts and engaging in discussions on a wider range of caregiving topics. Spousal caregivers also exhibited slower growth in positive emotional communication over time. The best machine learning model for predicting adult-child, spousal, or other caregivers achieved an area under the precision-recall curve of 81.3%. The subsequent trend analysis showed that it became more difficult to predict adult-child caregiver posts than spousal caregiver posts over time. This suggests that adult-child and spousal caregivers might gradually shift their discussions from questions that are more directly related to their own experiences and needs to questions that are more general and applicable to other types of caregivers. CONCLUSIONS: Our findings suggest that it is important for researchers and community organizers to consider the heterogeneity of caregiving experiences and subsequent online behaviors among different types of caregivers when tailoring online peer support to meet the specific needs of each caregiver group.
Subject(s)
Adult Children , Alzheimer Disease , Caregivers , Aged , Humans , Caregivers/psychology , Communication , Family , Social Support , Adult Children/psychologyABSTRACT
Hormonal therapy is an important adjuvant treatment for breast cancer patients, but medication discontinuation of such therapy is not uncommon. The goal of this paper is to conduct research on the modeling of clinic communications, which have shown value in understanding medication discontinuation, to predict the discontinuation of hormonal therapy medications. Notably, we leveraged the Hypergraph Neural Network to capture the hidden connections of patients that were inferred from clinical communications. Combining the content of clinical communications as well as the demographics, insurance, and cancer stage information, our model achieved an AUC of 67.9%, which significantly outperformed other baselines such as Graph Convolutional Network (65.3%), Random Forest (62.7%), and Support Vector Machine (62.8%). Our study suggested that incorporating the hidden patient connections encoded in clinical communications into prediction models could boost their performance. Future research would consider combining structured medical records and clinical communications to better predict medication discontinuation.
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BACKGROUND: By the end of 2022, more than 100 million people were infected with COVID-19 in the United States, and the cumulative death rate in rural areas (383.5/100,000) was much higher than in urban areas (280.1/100,000). As the pandemic spread, people used social media platforms to express their opinions and concerns about COVID-19-related topics. OBJECTIVE: This study aimed to (1) identify the primary COVID-19-related topics in the contiguous United States communicated over Twitter and (2) compare the sentiments urban and rural users expressed about these topics. METHODS: We collected tweets containing geolocation data from May 2020 to January 2022 in the contiguous United States. We relied on the tweets' geolocations to determine if their authors were in an urban or rural setting. We trained multiple word2vec models with several corpora of tweets based on geospatial and timing information. Using a word2vec model built on all tweets, we identified hashtags relevant to COVID-19 and performed hashtag clustering to obtain related topics. We then ran an inference analysis for urban and rural sentiments with respect to the topics based on the similarity between topic hashtags and opinion adjectives in the corresponding urban and rural word2vec models. Finally, we analyzed the temporal trend in sentiments using monthly word2vec models. RESULTS: We created a corpus of 407 million tweets, 350 million (86%) of which were posted by users in urban areas, while 18 million (4.4%) were posted by users in rural areas. There were 2666 hashtags related to COVID-19, which clustered into 20 topics. Rural users expressed stronger negative sentiments than urban users about COVID-19 prevention strategies and vaccination (P<.001). Moreover, there was a clear political divide in the perception of politicians by urban and rural users; these users communicated stronger negative sentiments about Republican and Democratic politicians, respectively (P<.001). Regarding misinformation and conspiracy theories, urban users exhibited stronger negative sentiments about the "covidiots" and "China virus" topics, while rural users exhibited stronger negative sentiments about the "Dr. Fauci" and "plandemic" topics. Finally, we observed that urban users' sentiments about the economy appeared to transition from negative to positive in late 2021, which was in line with the US economic recovery. CONCLUSIONS: This study demonstrates there is a statistically significant difference in the sentiments of urban and rural Twitter users regarding a wide range of COVID-19-related topics. This suggests that social media can be relied upon to monitor public sentiment during pandemics in disparate types of regions. This may assist in the geographically targeted deployment of epidemic prevention and management efforts.
Subject(s)
COVID-19 , Social Media , Humans , United States , COVID-19/epidemiology , Retrospective Studies , SARS-CoV-2 , AttitudeABSTRACT
Rheumatoid arthritis (RA), a chronic and systemic autoimmune disease that primarily attacks the joints around the body, is affecting a large number of people worldwide through severe symptoms and complications. Therefore, it is crucial to understand these patients' problems and support needs such that effective strategies or solutions can be made to improve their long-term treatment experience. In this paper, we present an in-depth study that is based on the structural topic model to uncover the themes and concerns in online RA posts from Reddit, an American social news aggregation, content rating, and discussion website. In addition, we compared the topic prevalence differences before and after the COVID-19 pandemic to understand the impact of the pandemic on these online users. This study demonstrates the potential of using text-mining techniques on social media data to learn the treatment experiments of RA patients.
Subject(s)
Arthritis, Rheumatoid , COVID-19 , Social Media , Humans , Pandemics , COVID-19/epidemiology , Arthritis, Rheumatoid/drug therapy , Fatigue/epidemiology , PainABSTRACT
Hormonal therapy (HT) reduces the risk of cancer recurrence and the mortality rate for patients with hormone-receptor-positive breast cancer. However, it is estimated that half of the patients fail to complete the standard 5-year adjuvant treatment protocol. We investigate the extent to which certain types of structured data in electronic medical records (EMRs), namely conditions, drugs, laboratory tests and procedures, as well as when such data is entered EMRs, can forecast HT discontinuation. Our experiments with EMR data from 2,251 patients showed that machine learning models based on these data types achieve fair performance (AUC of 0.65). More importantly, the performance was not statistically significantly different when fitting a model using all or only one feature type, suggesting that the model is robust to missing information in the EMR.
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BACKGROUND: In November 2018, a Chinese researcher reported that his team had applied clustered regularly interspaced palindromic repeats or associated protein 9 to delete the gene C-C chemokine receptor type 5 from embryos and claimed that the 2 newborns would have lifetime immunity from HIV infection, an event referred to as #GeneEditedBabies on social media platforms. Although this event stirred a worldwide debate on ethical and legal issues regarding clinical trials with embryonic gene sequences, the focus has mainly been on academics and professionals. However, how the public, especially stratified by geographic region and culture, reacted to these issues is not yet well-understood. OBJECTIVE: The aim of this study is to examine web-based posts about the #GeneEditedBabies event and characterize and compare the public's stance across social media platforms with different user bases. METHODS: We used a set of relevant keywords to search for web-based posts in 4 worldwide or regional mainstream social media platforms: Sina Weibo (China), Twitter, Reddit, and YouTube. We applied structural topic modeling to analyze the main discussed topics and their temporal trends. On the basis of the topics we found, we designed an annotation codebook to label 2000 randomly sampled posts from each platform on whether a supporting, opposing, or neutral stance toward this event was expressed and what the major considerations of those posts were if a stance was described. The annotated data were used to compare stances and the language used across the 4 web-based platforms. RESULTS: We collected >220,000 posts published by approximately 130,000 users regarding the #GeneEditedBabies event. Our results indicated that users discussed a wide range of topics, some of which had clear temporal trends. Our results further showed that although almost all experts opposed this event, many web-based posts supported this event. In particular, Twitter exhibited the largest number of posts in opposition (701/816, 85.9%), followed by Sina Weibo (968/1140, 84.91%), Reddit (550/898, 61.2%), and YouTube (567/1078, 52.6%). The primary opposing reason was rooted in ethical concerns, whereas the primary supporting reason was based on the expectation that such technology could prevent the occurrence of diseases in the future. Posts from these 4 platforms had different language uses and patterns when they expressed stances on the #GeneEditedBabies event. CONCLUSIONS: This research provides evidence that posts on web-based platforms can offer insights into the public's stance on gene editing techniques. However, these stances vary across web-based platforms and often differ from those raised by academics and policy makers.
Subject(s)
HIV Infections , Social Media , China/epidemiology , Humans , Infant, Newborn , Public OpinionABSTRACT
Background: As direct-to-consumer genetic testing services have grown in popularity, the public has increasingly relied upon online forums to discuss and share their test results. Initially, users did so anonymously, but more recently, they have included face images when discussing their results. Various studies have shown that sharing images on social media tends to elicit more replies. However, users who do this forgo their privacy. When these images truthfully represent a user, they have the potential to disclose that user's identity. Objective: This study investigates the face image sharing behavior of direct-to-consumer genetic testing users in an online environment to determine if there exists an association between face image sharing and the attention received from other users. Methods: This study focused on r/23andme, a subreddit dedicated to discussing direct-to-consumer genetic testing results and their implications. We applied natural language processing to infer the themes associated with posts that included a face image. We applied a regression analysis to characterize the association between the attention that a post received, in terms of the number of comments, the karma score (defined as the number of upvotes minus the number of downvotes), and whether the post contained a face image. Results: We collected over 15,000 posts from the r/23andme subreddit, published between 2012 and 2020. Face image posting began in late 2019 and grew rapidly, with over 800 individuals revealing their faces by early 2020. The topics in posts including a face were primarily about sharing, discussing ancestry composition, or sharing family reunion photos with relatives discovered via direct-to-consumer genetic testing. On average, posts including a face image received 60% (5/8) more comments and had karma scores 2.4 times higher than other posts. Conclusions: Direct-to-consumer genetic testing consumers in the r/23andme subreddit are increasingly posting face images and testing reports on social platforms. The association between face image posting and a greater level of attention suggests that people are forgoing their privacy in exchange for attention from others. To mitigate this risk, platform organizers and moderators could inform users about the risk of posting face images in a direct, explicit manner to make it clear that their privacy may be compromised if personal images are shared.