“People power” or “pester power”? YouTube as a forum for the generation of evidence and patient advocacy

Mazanderani, Fadhila; O’Neill, Braden; Powell, John

doi:10.1016/j.pec.2013.06.006

Cited by 68 publications

(67 citation statements)

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“…Lower age and more education predicted higher eHealth literacy, and more education and being a female was associated with a high usage of Web 2.0 for retrieving health information [30][31][32]. Women [32] and teenagers [33] with a chronic disease were more active in engaging and participating in health-enhancing behaviors online than the general population.…”

Section: Influence Behaviormentioning

confidence: 96%

Social Media Usage for Patients and Healthcare Consumers: A Literature Review

2017

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Abstract:The evolution of Internet from static Web "publishing" to the highly participative, and data-driven, innovations of Web 2.0 has been influencing how people search for health-related information. This review included studies indexed in the PubMed electronic database that focused on social media analysis, examining relationships between participants (patients and healthcare consumers) through social media usage. The obtained results showed that previous research regarding social media's impact on patients and healthcare consumers aimed at a combination of platforms, but there is a penury of information about niche topics or its usage for retrieving medical information. Nevertheless, social media proved to be to be a promising tool in research mainly for recruitment purposes. The review has outlined that eHealth literacy is an attribute for populations that are female and relatively young and educated. Blogs share personal experiences, YouTube contains unregulated, high-and low-quality information that can mislead individuals, Facebook contains more marketing than health-related information, while Wikipedia is recommended for providing high-quality information. Despite healthcare practitioners' and healthcare public institutions' reluctance about the use of social media, this review demonstrates the usefulness of social media for patients and healthcare consumers in retrieving health-related information based on content availability and usage implications, and highlights gaps in knowledge that further research needs to fill.

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Section: Influence Behaviormentioning

confidence: 96%

Social Media Usage for Patients and Healthcare Consumers: A Literature Review

2017

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“…Second, we performed a content analysis on YouTube videos about CCSVI. 84 Third, we used telephone interviews to further develop the themes emerging from our online observations. These methods were supplemented by an advisory workshop with people affected by MS that took place in November 2011 at the University of Oxford (see Chapter 10).…”

Section: Methodsmentioning

confidence: 99%

“…A significant portion of what we found related to the emotional and therapeutic benefits of peer support. As this has already been discussed in depth elsewhere, 25,84 we chose to focus on other aspects of why interviewees share their experiences, especially in more public forums.…”

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Examining the role of patients’ experiences as a resource for choice and decision-making in health care: a creative, interdisciplinary mixed-method study in digital health

Ziébland

Powell

Briggs

et al. 2016

Programme Grants Appl Res

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BackgroundTraditional health information has been based on facts and figures and not on patient experience (PEx). Websites featuring people’s accounts of their experiences of health and illness are popular as a source of information, support and much else. However, there are concerns that experiential information on the internet might have adverse effects on health.AimsTo find out whether, when and how the NHS should incorporate PEx into online health information and elucidate the mechanisms through which PEx might influence health, develop a tool to measure the effects of online PEx, explore how PEx is used, and investigate the feasibility and acceptability of a randomised controlled trial of online PEx.MethodsMixed methods, including a conceptual literature review, qualitative secondary data analysis, the development of a new questionnaire, online ethnography, observational and experimental studies in an internet café environment, and finally feasibility trials to compare new websites based on PEx with those based on facts and figures.ResultsThe review concluded that online PEx could affect health outcomes through seven domains (information, support, affecting relationships, providing ideas on how to use health services, influencing behaviour change, learning to tell the story and visualising illness). We developed the e-Health Impact Questionnaire, which demonstrates good psychometric properties and is suitable for use across different health groups and various styles of online information. Online ethnographic studies found three types of PEx on multiple sclerosis (MS) platforms: accounts of ‘living with MS’, self-expression and creativity, and experiences of health care and treatment. Observational and laboratory-based methods included studies of how people find and use PEx to inform health choices. We developed a three-stage model (gating, the engagement loop and outcomes) which guided the development of six prototype multimedia websites featuring either experiential information (intervention) or factual information (comparator) for three exemplar health issues. We evaluated the feasibility and acceptability of a trial of the prototype PEx websites, comparing self-report and process measures with a comparator. In the three conditions we randomised 87 (smoking cessation), 148 (asthma), and 42 (caring for someone with MS) participants. At final (2-week) follow-up, retention rates were 75%, 82% and 86%, for smoking cessation, asthma and MS carers, respectively. Usage of the allocated websites was low. The median number of logins to the websites over the 2-week period was two, two and four; the median number of page views was 10, 15 and 27.5, respectively, with a median total duration on site of 9 minutes, 17 minutes and 31.5 minutes respectively. There were no reported adverse events or harms. The qualitative interviews with 30 trial participants found that the trial methods were acceptable and not burdensome and that preferences for combinations of different types of information were both idiosyncratic and dependent on timing and need.LimitationsThis programme used a pragmatic, mixed-methods approach, in which we adapted some standard approaches (e.g. realist review). The conceptual review provided a framework for the whole programme but did not draw on a single overarching theoretically informed approach. Instead, we used relevant theory and methods from the work package leads, who represented a range of disciplines.ConclusionsOnline PEx is not seen as an alternative to facts, or to care from a health professional, but is used in addition to other sources of information, support and expression. This programme of work indicates how the sharing of online PEx may benefit people, and how this can be measured. A randomised controlled trial is feasible but an allocated ‘exposure’ to a ‘dose of information’ is far from from how online experiences are shared in everyday life. Future work evaluating online health interventions which incorporate personal experiences should aim to reflect ‘natural’ use of the internet and might include online ethnography and offline interviews. Studies might explore how and why people use online sources of experience-based health information, and the effects on subsequent behaviour and health and social outcomes in different conditions. Future intervention research evaluating online health interventions should examine and explain issues of engagement and use, and seek to identify how to increase engagement.Trial registrationCurrent Controlled Trials ISRCTN29549695.FundingThis project was funded by the Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research; Vol. 4, No. 17. See the NIHR Journals Library website for further project information.

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“…La introducción de este recurso en la vida de las personas con TMG para la obtención de más información sobre el trastorno ha dado lugar a estudios en los que se investigan los recursos online utilizados (p.ej., Haker et al, 2005;kaplan et al, 2011;Mazanderani, O´Neill y Powell, 2013;Schrank, Sibitz, Unger y Amering, 2010), así como la calidad de la información de los sitios webs (p.ej., Gorczynski, Patel y Ganguli, 2013;Read, 2008). Respecto a los recursos online utilizados, lo más frecuente es el acceso a la información a través de las páginas webs obtenidas como resultado del uso de un buscador y/o la participación en comunidades virtuales (p.…”

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Claves y evidencias del uso de las TIC en trastorno mental

Mateu-Mateu

Gómez

2015

PSYE

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RESUMEN:El modo de organizarse y relacionarse ha sufrido profundos cambios desde la irrupción de las tecnologías de la información y la comunicación (TIC). La presencia de éstas es cada vez más frecuente y necesaria. La evaluación de las consecuencias del uso de las TIC es importante a nivel general, pero más aún en poblaciones específicas como en las personas diagnosticadas con trastorno mental grave (TMG). Por este motivo, el objetivo de este estudio es analizar las claves y evidencias presentes en la literatura acerca de la aplicación y el uso de las TIC en personas con TMG, así como los beneficios y/o perjuicios que pudieran derivarse. El análisis abarca el uso de las TIC como herramienta de búsqueda de información, para la participación en grupos de apoyo online y para el establecimiento de relaciones sociales. Los resultados a nivel general indican las ventajas de las TIC para la integración en la sociedad e incluso para la mejora clínica en personas con TMG. Sin embargo, variables como la poca alfabetización digital, la ausencia de una buena relación terapéutica y/o ciertas características de las TIC, pueden mermar los efectos positivos. Palabras clave: tecnología de la información y la comunicación, esquizofrenia, alfabetización digital e internet. Keys and evidences of the use of ICT in severe mental disorderABSTRACT: The way of organizing and relating has suffered deep change since the emergence of the information and communica tiontechnologies (ICT). Their presenceis more and more common and necessary. In general, the evaluation of the consequences of the use of ICT is important but it is even more in specific population such as peoplediagnosedwithsevere mental disorder (SMD). For this reason, the objetive of this study is to analyze the information reported in the literature about the keys and evidences of the application and use of ICT in people with SMD, as well as the benefits and damages of them. The analysis includes the use of ICT as search tool, for participation in online support groups and for the development of social relationships. In general, the results show the advantages of ICT for social integration and clinical improvement of the people with SMD. Nevertheless, some variables can reduce the positive effects such as the little digital literacy, the lack of therapy relation and several features of ICT.

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“People power” or “pester power”? YouTube as a forum for the generation of evidence and patient advocacy

Cited by 68 publications

References 39 publications

Social Media Usage for Patients and Healthcare Consumers: A Literature Review

Social Media Usage for Patients and Healthcare Consumers: A Literature Review

Examining the role of patients’ experiences as a resource for choice and decision-making in health care: a creative, interdisciplinary mixed-method study in digital health

Claves y evidencias del uso de las TIC en trastorno mental

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