Manuel Armayones

Identifying Measures Used for Assessing Quality of YouTube Videos with Patient Health Information: A Review of Current Literature

Background Recent publications on YouTube have advocated its potential for patient education. However, a reliable description of what could be considered quality information for patient education on YouTube is missing. Objective To identify topics associated with the concept of quality information for patient education on YouTube in the scientific literature. Methods A literature review was performed in MEDLINE, ISI Web of Knowledge, Scopus, and PsychINFO. Abstract selection was first conducted by two independent reviewers; discrepancies were discussed in a second abstract review with two additional independent reviewers. Full text of selected papers were analyzed looking for concepts, definitions, and topics used by its authors that focused on the quality of information on YouTube for patient education. Results In total, 456 abstracts were extracted and 13 papers meeting eligibility criteria were analyzed. Concepts identified related to quality of information for patient education are categorized as expert-driven, popularity-driven, or heuristic-driven measures. These include (in descending order): (1) quality of content in 10/13 (77%), (2) view count in 9/13 (69%), (3) health professional opinion in 8/13 (62%), (4) adequate length or duration in 6/13 (46%), (5) public ratings in 5/13 (39%), (6) adequate title, tags, and description in 5/13 (39%), (7) good description or a comprehensive narrative in 4/13 (31%), (8) evidence-based practices included in video in 4/13 (31%), (9) suitability as a teaching tool in 4/13 (31%), (10) technical quality in 4/13 (31%), (11) credentials provided in video in 4/13 (31%), (12) enough amount of content to identify its objective in 3/13 (23%), and (13) viewership share in 2/13 (15%). Conclusions Our review confirms that the current topics linked to quality of information for patient education on YouTube are unclear and not standardized. Although expert-driven, popularity-driven, or heuristic-driven measures are used as proxies to estimate the quality of video information, caution should be applied when using YouTube for health promotion and patient educational material.

Social media in health - what are the safety concerns for health consumers?

Recent literature has discussed the unintended consequences of clinical information technologies (IT) on patient safety, yet there has been little discussion about the safety concerns in the area of consumer health IT. This paper presents a range of safety concerns for consumers in social media, with a case study on YouTube. We conducted a scan of abstracts on ‘quality criteria’ related to YouTube. Five areas regarding the safety of YouTube for consumers were identified: (a) harmful health material targeted at consumers (such as inappropriate marketing of tobacco or direct-to-consumer drug advertising); (b) public display of unhealthy behaviour (such as people displaying self-injury behaviours or hurting others); (c) tainted public health messages (i.e. the rise of negative voices against public health messages); (d) psychological impact from accessing inappropriate, offensive or biased social media content; and (e) using social media to distort policy and research funding agendas. The examples presented should contribute to a better understanding about how to promote a safe consumption and production of social media for consumers, and an evidence-based approach to designing social media interventions for health. The potential harm associated with the use of unsafe social media content on the Internet is a major concern. More empirical and theoretical studies are needed to examine how social media influences consumer health decisions, behaviours and outcomes, and devise ways to deter the dissemination of harmful influences in social media.

Avatars using computer/smartphone mediated communication and social networking in prevention of sexually transmitted diseases among North-Norwegian youngsters

BackgroundSexually transmitted diseases (STDs), especially the Chlamydia trachomatis bacterial infection, a common cause of infertility, are highly prevalent in developed countries, and a worrying problem in North Norway, where the incidence of chlamydia twice the Norwegian average. Seventy percent of reported chlamydia cases are found in people below 25 years of age, and although its spread could be controlled with proper prevention, young people are more aware of the risks of unwanted pregnancy than their risk of acquiring a STD. Information and Communication Technologies, including, the Internet, social media and/or smartphones, should be valued for sexual health promotion for their potential to engage young audiences. And in these media, avatars guarantee anonymity to users when handling sensitive information. The main objective of this project is to achieve that North Norwegian youngsters become more aware of STDs through the use of popular technologies among young people.MethodsA Virtual Clinic for Sexually Transmitted Diseases (VCSTD) will be developed. The VCSTD will provide early guidance and reliable information sources concerning reproductive health, delivered in a novel and innovative way to the younger population. The VCSTD consists of an “avatar” supported intervention in a serious gaming and e-learning environment, which will bypass direct physical access (in person) to reliable medical information, as well as allowing the youngsters to share that information in social media, and thus helping the VCSTD to be disseminated to more people.Data analyses will be conducted on publically available health data relevant to STDs in Troms and Finnmark, like the absolute number of chlamydia tests, the amount of emergency contraception medication sold, and the number of abortions. Also, usage data of the system and experiences of usefulness will be explored through participants’ voluntary responses to a feedback form available in the VCSTD.DiscussionThis study will examine the usefulness of an online public health intervention that aims to promote healthy sexual practices among North-Norwegian youngsters. If shown to be effective, the intervention could prove to be an affordable and widely accessible intervention to decrease risky sexual practices in younger population.

ePatients on YouTube: Analysis of Four Experiences From the Patients' Perspective

Background Many patients share their personal experiences and opinions using online video platforms. These videos are watched by millions of health consumers and health care professionals. Although it has become a popular phenomenon, little is known about patients who share videos online and why they do so. Objective We aimed to explore the motivations and challenges faced by patients who share videos about their health and experiences on YouTube. As part of a conference discussion, we asked several patients actively engaged on YouTube to make a video explaining their motivations. This paper discusses these videos. Methods In this qualitative study, we performed an analysis of the videos created by 4 patients about their self-reported motivations and challenges they face as YouTube users. First, two judges compared the transcriptions and decided the exact wording when confusing content was found. Second, two judges categorized the content of the videos to identify the major themes. Results Four main categories emerged: (1) the origin or cause for making the first video, (2) the objectives that they achieve by continuing to make videos, (3) the perception of community, and (4) the negative consequences of the experience. Conclusions The main reason for making videos was to bridge the gap between traditional health information about their diseases and everyday life. The first consequence of sharing their life on YouTube was a loss of privacy. However, they also experienced the positive effects of expressing their feelings, being part of a large community of peers, and helping others to deal with a chronic condition.

Internet Use and Suicidal Behaviors: Internet as a Threat or Opportunity?

BACKGROUND Suicidal behavior is a common and severe health problem around the world. Internet use has been related to an increase in suicidal behaviors, but few studies have focused on the potential benefits of Internet use for preventing self-harm and suicide. MATERIALS AND METHODS We reviewed the existing literature on the relationship between suicide and Internet use. RESULTS The accessibility of suicide-related information on the Internet seems to have an impact on the incidence of suicide behaviors. However, the Internet is useful for linking people who feel lonely or isolated, and it provides access to suicide prevention information and resources. The Internet can influence vulnerable people to attempt suicide, but it can also be used to prevent self-harm and suicide. CONCLUSIONS We propose some efforts that can be made in this preventive line.

Grupos sobre alimentación saludable en Facebook: características y contenidos

OBJECTIVE To determine the features and use of groups related to healthy eating on Facebook. METHOD We carried out a cross-sectional study through the Internet. Using the API on Facebook, we included open groups related to healthy eating in the Spanish language. The variables studied were name, description, category, the number and gender of users, date of creation, number of posts, content of the first 20 posts, and the most recent update. RESULTS We selected 281 open groups for inclusion in the study. Of these, 125 were excluded because the content was unrelated to healthy eating. Finally 156 groups were studied with 14,619 users (10,373 women [71%] and 3,919 men [26.8%]). Dietary products were promoted by 40% of the groups. CONCLUSIONS Facebook is used as a means of communication and for sharing health information. Because many of these groups promote dietary products, their usefulness for health education is doubtful. Health organizations should participate in social media.

Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases

Web-based interventions are effective on the patient empowerment. Guiametabolica.org constitutes an interface for people involved in inherited metabolic diseases, trying to facilitate access to information and contact with professionals and other patients, offering a platform to develop support groups. Guiametabolica.org is widely considered for Spanish-speaking patients and caregivers with inherited metabolic diseases. Preliminary evaluations show changes in their habits, decrease in their senses of isolation and improvement regarding self-efficacy. Specific inherited metabolic diseases websites, especially participative websites, should be considered as a complement to more traditional clinical approaches. Their contribution lies in patient’s general well-being, without interfering with traditional care.

Analysis of patient organizations' needs and ICT use--The APTIC project in Spain to develop an online collaborative social network.

The purpose of this first part of the APTIC (Patient Organisations and ICT) project is to design and run an online collaborative social network for paediatric patient organizations (PPOs).

El uso de Facebook en asociaciones españolas de enfermedades raras: ¿cómo y para qué lo utilizan?

OBJECTIVE To study whether the use of Facebook is widespread in the field of patient associations for rare diseases and, if so, the purpose for which the site is being used. METHOD A descriptive study was conducted to determine whether associations within the Spanish Federation for Rare Diseases use Facebook and, if so, the type of use and its objectives. The analysis was performed based on a categorization system that has been used in the field of chronic diseases and has been adapted to the specific characteristics of rare diseases. RESULTS Associations use Facebook to raise awareness of rare diseases in general and particularly to share content related to psychological, medical and social support, the promotion and dissemination of research, and fundraising. CONCLUSIONS The alignment between the interests of associations through their presence on Facebook and policy areas of the national strategy for rare diseases is a reason for optimism about the feasibility of using Facebook as a tool for encounters and collaborative work.

Mining Facebook Data of People with Rare Diseases

This research is concerned with the study of Spanish Facebook pages that deal with rare diseases. The objectives of this research are to characterise these pages and to compare them with the priorities of the Decalogue of the Spanish Federation of Rare Diseases (FEDER). This research uses Netvizz to download the data, word clouds in R to perform text mining, TextBlob in Python to perform sentiment analysis, and log-likelihood in R to compare Facebook and Decalogue words. The results obtained show that photos are the type of posts with higher number of likes, reactions and engagement. We can also see that positive polarities have higher level of engagement, and that subjectivity is not so correlated with engagement. In the comparison of the Facebook data with the FEDER Decalogue, we observe that the following words have a lot of presence in the Decalogue and little in Facebook: disability, professionals and diseases. Similarly, these are the most present on Facebook with little representation in the Decalogue: help, life, people and children. In conclusion, we can say that the Decalogue should focus more on help, life, people and children and less on disability, professionals and diseases.