RESUMEN
While the internet has democratized and accelerated content creation and sharing, it has also made people more vulnerable to manipulation and misinformation. Also, the received information can be distorted by psychological biases. This is problematic especially in health-related communications which can greatly affect the quality of life of individuals. We assembled and analyzed 364 texts related to nutrition and health from Finnish online sources, such as news, columns and blogs, and asked non-experts to subjectively evaluate the texts. Texts were rated for their trustworthiness, sentiment, logic, information, clarity, and neutrality properties. We then estimated individual biases and consensus ratings that were used in training regression models. Firstly, we found that trustworthiness was significantly correlated to the information, neutrality and logic of the texts. Secondly, individual ratings for information and logic were significantly biased by the age and diet of the raters. Our best regression models explained up to 70% of the total variance of consensus ratings based on the low-level properties of texts, such as semantic embeddings, presence of key-terms and part-of-speech tags, references, quotes and paragraphs. With a novel combination of crowdsourcing, behavioral analysis, natural language processing and predictive modeling, our study contributes to the automated identification of reliable and high-quality online information. While critical evaluation of truthfulness cannot be surrendered to the machine only, our findings provide new insights into automated evaluation of subjective text properties and analysis of morphologically-rich languages in regards to trustworthiness.
Asunto(s)
Comunicación , Informática Aplicada a la Salud de los Consumidores/normas , Información de Salud al Consumidor/normas , Dieta , Estilo de Vida Saludable , Confianza , Informática Aplicada a la Salud de los Consumidores/estadística & datos numéricos , Información de Salud al Consumidor/estadística & datos numéricos , Humanos , Internet , Modelos EstadísticosRESUMEN
While chronic diseases remain a global problem, visualizations of data and information are a potential solution to assist patients with chronic disease in communication, self-management, and decision making. The purpose of this systematic review is to synthesize evidence regarding data and information visualizations integrated into consumer health informatics solutions for chronic disease management in the community. A search was conducted in CINAHL, EMBASE, Engineering Village, PsycINFO, PubMed, and Web of Science between January 1, 2007, and May 1, 2019. Studies were evaluated using the Mixed Methods Appraisal Tool. Of the 2549 published studies, six studies met inclusion criteria. Of these six studies, two used information visualizations, two used data visualizations, and two used both information and data visualizations. Graphs were the main type of visualization used. Visualizations were mainly delivered in mobile applications and were interactive. The goals of the visualizations varied across studies including to (1) improve understanding of health data, (2) improve patient-provider communication, (3) monitor chronic disease, and/or (4) improve chronic disease management. Five studies reported subjective outcomes of the visualizations (eg, perceived usability, acceptability). One study reported both subjective and objective outcomes (eg, recall) of the visualizations. Findings highlight the need for more research on data and information visualizations integrated into consumer health technologies that support chronic disease management in daily life.
Asunto(s)
Enfermedad Crónica/terapia , Informática Aplicada a la Salud de los Consumidores/métodos , Aplicaciones Móviles/normas , Automanejo/métodos , Enfermedad Crónica/psicología , Informática Aplicada a la Salud de los Consumidores/normas , Humanos , Aplicaciones Móviles/tendencias , Automanejo/psicologíaRESUMEN
BACKGROUND: Electronic health record (EHR) patient portals provide a means by which patients can access their health information, including diagnostic test results. Little is known about portal usage by emergency department (ED) patients. OBJECTIVE: The study aimed to assess patient portal utilization by ED patients at an academic medical center using account activation rates along with the rates of access of diagnostic test results (laboratory results and radiology reports), analyzing the impact of age, gender, and self-reported patient race. METHODS: This institutional review board-approved retrospective study was performed at a 60,000-visits-per-year university-based ED. We utilized EHR data reporting tools to examine EHR portal activation and utilization for all patients who had at least one ED encounter with one or more diagnostic tests performed between October 1, 2016, and October 1, 2017. The total dataset for laboratory testing included 208,635 laboratory tests on 25,361 unique patients, of which 9482 (37.39%) had active portal accounts. The total dataset for radiologic imaging included 23,504 radiology studies on 14,455 unique patients, of which 5439 (37.63%) had an active portal account. RESULTS: Overall, 8.90% (18,573/208,635) of laboratory tests and 8.97% (2019/22,504) of radiology reports ordered in the ED were viewed in the patient portal. The highest rates of viewing of laboratory and radiology results were seen for those who were female, were aged 0 to 11 years (parent or guardian viewing by proxy) and 18 to 60 years, and self-reported their race as Caucasian or Asian. The lowest rates were for those who were teenagers, aged older than 81 years, African American/black, and Hispanic/Latino. Infectious disease, urinalysis, and pregnancy testing constituted the highest number of laboratory tests viewed. Magnetic resonance imaging reports were viewed at higher rates than computed tomography or x-ray studies (P<.001). Approximately half of all the diagnostic test results accessed by patients were reviewed within 72 hours of availability in the patient portal (laboratory results: 9904/18,573, 53.32% and radiology reports: 971/2019, 48.1%). On the other extreme, 19.9% (3701/18,573) of laboratory results and 31.6% (639/2019) of radiology reports were viewed more than 2 weeks after availability in the portal. CONCLUSIONS: The data highlight the relatively low use of a patient portal by ED patients and existing disparities between patient groups. There can be wide lag time (months) between result/report availability and access by patients. Opportunities for improvement exist for both activation and more robust utilization of patient portals by ED patients.
Asunto(s)
Informática Aplicada a la Salud de los Consumidores/normas , Pruebas Diagnósticas de Rutina/métodos , Registros Electrónicos de Salud/normas , Portales del Paciente/normas , Centros Médicos Académicos , Adolescente , Adulto , Servicio de Urgencia en Hospital , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Retrospectivos , Adulto JovenRESUMEN
This paper will discuss why and how social network sites ought to be used in surrogate decision making (SDM), with focus on a context like Singapore in which substituted judgment is incorporated as part of best interest assessment for SDM, as guided by the Code of Practice for making decisions for those lacking mental capacity under the Mental Capacity Act (2008). Specifically, the paper will argue that the Code of Practice already supports an ethical obligation, as part of a patient-centred care approach, to look for and appraise social network site (SNS) as a source of information for best interest decision making. As an important preliminary, the paper will draw on Berg's arguments to support the use of SNS information as a resource for SDM. It will also supplement her account for how SNS information ought to be weighed against or considered alongside other evidence of patient preference or wishes, such as advance directives and anecdotal accounts by relatives.
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Directivas Anticipadas/ética , Informática Aplicada a la Salud de los Consumidores/ética , Toma de Decisiones/ética , Consentimiento Informado/ética , Prioridad del Paciente/estadística & datos numéricos , Red Social , Informática Aplicada a la Salud de los Consumidores/normas , Ética Clínica , Humanos , Tutores Legales , Competencia MentalRESUMEN
AIM: Breast cancer is the most common cancer type among women necessitating adjuvant radiotherapy. As the Internet has become a major source of information for cancer patients, this study aimed to evaluate the quality of websites giving information on side effects of radiotherapy for breast cancer patients. METHODS: A patients' search for the English terms "breast cancer - radiotherapy - side effects" and the corresponding German terms "Brustkrebs - Strahlentherapie - Nebenwirkungen" was carried out twice (5 months apart) using the search engine Google. The first 30 search results each were evaluated using the validated 16-question DISCERN Plus instrument, the Health on the Net Code of Conduct (HONcode) certification and the Journal of the American Medical Association (JAMA) benchmark criteria. The overall quality (DISCERN score) of the retrieved websites was further compared to queries via Bing and Yahoo search engines. RESULTS: The DISCERN score showed a great range, with the majority of websites ranking fair to poor. Significantly superior results were found for English websites, particularly for webpages run by hospitals/universities and nongovernmental organizations (NGO), when compared to the respective German categories. In general, only a minority of websites met all JAMA benchmarks and was HONcode certified (both languages). We did not determine a relevant temporal change in website ranking among the top ten search hits, while significant variation occurred thereafter. Mean overall DISCERN score was similar between the various search engines. CONCLUSION: The Internet can give breast cancer patients seeking information on side effects of radiotherapy an overview. However, based on the currently low overall quality of websites and the lack of transparency for the average layperson, we emphasize the value of personal contact with the treating radio-oncologist in order to integrate and interpret the information found online.
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Neoplasias de la Mama/radioterapia , Informática Aplicada a la Salud de los Consumidores/normas , Internet , Traumatismos por Radiación/etiología , Radioterapia Adyuvante/efectos adversos , Exactitud de los Datos , Alemania , Humanos , Motor de BúsquedaRESUMEN
BACKGROUND: Growing up with congenital heart disease (CHD) often means transfer to adult care and lifelong medical follow-up. An optimal transition process usually involves a multipart collaboration between the patient, their parents and other family members, and the healthcare providers. Taking an active role while knowing when it is time to step aside can be difficult for all the concerned parties, even the healthcare professionals. The aim of the present study therefore, was to explore parents' expectations and needs during their adolescent's transition to adult care. METHOD: Semi-structured interviews were conducted with 18 parents of 16 adolescents (aged 13-18 years) with CHD in 4 pediatric cardiology settings in Sweden. The interviews were analysed with qualitative content analysis. RESULTS: The analysis resulted in 2 main themes: (a) Feeling secure-the importance of being prepared and informed. This theme focused on the need to be prepared and informed about transition and future transfer to adult care. (b) Recognizing when to hand over at the right time. This theme addressed the process of handing over the responsibility from the parent to the adolescents and contained handing over from pediatric care to adult care. CONCLUSION: Being prepared and informed about the upcoming transition process was essential. The parents underlined the importance of being involved in the transition planning for gradually handing over responsibility to the adolescent. They also considered establishing contact with the adult healthcare team before transfer as important and needed to be assured that CHD-related information of importance for the young person's daily life would be given.
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Actitud Frente a la Salud , Cardiopatías Congénitas/terapia , Padres/psicología , Transición a la Atención de Adultos/organización & administración , Adolescente , Informática Aplicada a la Salud de los Consumidores/normas , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Relaciones Padres-Hijo , Educación del Paciente como Asunto , Relaciones Profesional-Familia , Investigación Cualitativa , SueciaRESUMEN
INTRODUCTION: Previous research demonstrates that patients seek high-quality information on the World Wide Web, especially in rare conditions such as microtia. Social media has overtaken other sources of patient information but quality remains untested. This study quantifies the quality of information for patients with Microtia on social media compared with nonsocial media websites and compares physician and patient scoring on quality using the DISCERN tool. METHODS: In phase 1, quality of the top 100 websites featuring information "Microtia" was ranked according to quality score and position on Google showing the position of social media websites among other nonsocial media websites. Phase 2 involved independent scoring of websites on microtia compared with a patient group with microtia to test whether physicians score differently to patients with t test comparison. RESULTS: Social media websites account for 2% of the scored websites with health providers linking to social media. Social media websites were among the highest ranked on Google. No correlation was found between the quality of information and Google rank. Social media scored higher than nonsocial media websites regarding quality of information on microtia. No significant difference existed between physician and patient quality of information scores on social media and nonsocial media websites (p 1.033). CONCLUSION: Physicians and patients objectively score microtia websites alike. Social media websites have higher use despite being few in number compared with nonsocial media websites. Physicians providing links to social media on information websites on rare conditions such as microtia are engaging in current information-seeking trends.
Asunto(s)
Actitud del Personal de Salud , Microtia Congénita/psicología , Informática Aplicada a la Salud de los Consumidores/normas , Conducta en la Búsqueda de Información , Internet/normas , Medios de Comunicación Sociales/normas , Humanos , Difusión de la Información , Estudios Prospectivos , Garantía de la Calidad de Atención de Salud/normas , Reproducibilidad de los Resultados , Reino UnidoRESUMEN
Parents of children with a cleft lip and/or palate (CL/P) and patients with CL/P actively search for online information about CL/P. The quality of this information has not been sufficiently evaluated. The aim of this study was to define quality criteria for online information about CL/P and assess the quality of frequently accessed websites. Patients, parents, and professionals were equally involved in all stages of this study. A literature review was performed to obtain known quality criteria for online information. These criteria were prioritized by patients, parents, and professionals. The most important criteria were used to rate the quality of four websites on CL/P. Forty-two quality items were extracted from the literature. Patients, parents, and professionals agreed on the importance of 16 of these items. New groups of patients, parents, and professionals assessed four websites on CL/P. Although the groups were like-minded in their overall assessment of the quality of the websites, distinct differences emerged between the groups in relation to certain items. This study shows the importance of patient participation in healthcare research, as well as a feasible approach to do so. Involving patients in composing online health information will set different priorities, which is necessary in establishing high quality information.