"People Power" or "Pester Power"?:YouTube as a Forum for the Generation of Evidence and Patient Advocacy

OBJECTIVE: Venoplasty has been proposed, alongside the theory of chronic cerebrospinal venous insufficiency (CCSVI), as a treatment for multiple sclerosis (MS). Despite concerns about its efficacy and safety, thousands of patients have undergone the procedure. This paper analyses YouTube videos where patients have shared their treatment experiences. METHODS: Content analysis on the 100 most viewed videos from over 4000 identified in a search for 'CCSVI', and qualitative thematic analysis on popular 'channels' demonstrating patients' experiences. RESULTS: Videos adopt an overwhelmingly positive stance towards CCSVI; many were uploaded by patients and present pre- and/or post-treatment experiences. Patients demonstrate rather than merely describe their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combine medical terminology and tests with personal experiences of living with MS. CONCLUSION: Social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of 'evidence' built on a hybrid of personal experience and medical knowledge. PRACTICE IMPLICATIONS: Healthcare practitioners need to engage with new digital forms of content, including online social media. Instead of disregarding sources not considered 'evidence-based', practitioners should enhance their understanding of what 'experiential-evidence' is deemed significant to patients, particularly in contested areas of healthcare

Marginal structural models using calibrated weights with SuperLearner: application to longitudinal diabetes cohort.

Although machine learning has permeated many disciplines, the convergence of causal methods and machine learning remains sparse in the existing literature. Our aim was to formulate a marginal structural model in which we envisioned hypothetical (i.e. counterfactual) dynamic treatment regimes using a combination of drug therapies to manage diabetes: metformin, sulfonylurea and SGLT-2. We were interested in estimating “diabetes care provision” in next calendar year using a composite measure of chronic disease prevention and screening elements. We demonstrated the application of dynamic treatment regimes using the National Diabetes Action Canada Repository in which we applied a collection of mainstream statistical learning algorithms. We generated an ensemble of statistical learning algorithms using the SuperLearner based on the following base learners: (i) least absolute shrinkage and selection operator, (ii) ridge regression, (iii) elastic net, (iv) random forest, (v) gradient boosting machines, (vi) neural network. Each statistical learning algorithm was fitted using the pseudo-population with respect to the marginalization of the time-dependent confounding process. The covariate balance was assessed using the longitudinal (i.e. cumulative-time product) stabilized weights with calibrated restrictions. Our results indicated that the treatment drop-in cohorts (with respect to metformin, sulfonylurea and SGLT-2) may improve diabetes care provision in relation to treatment naïve cohort. As a clinical utility, we hope that this article will facilitate discussions around the prevention of adverse chronic outcomes associated with diabetes through the improvement of diabetes care provisions in primary care

Dietary Supplementation with Soluble Plantain Non-Starch Polysaccharides Inhibits Intestinal Invasion of Salmonella Typhimurium in the Chicken

Soluble fibres (non-starch polysaccharides, NSP) from edible plants but particularly plantain banana (Musa spp.), have been shown in vitro and ex vivo to prevent various enteric pathogens from adhering to, or translocating across, the human intestinal epithelium, a property that we have termed contrabiotic. Here we report that dietary plantain fibre prevents invasion of the chicken intestinal mucosa by Salmonella. In vivo experiments were performed with chicks fed from hatch on a pellet diet containing soluble plantain NSP (0 to 200 mg/d) and orally infected with S.Typhimurium 4/74 at 8 d of age. Birds were sacrificed 3, 6 and 10 d post-infection. Bacteria were enumerated from liver, spleen and caecal contents. In vitro studies were performed using chicken caecal crypts and porcine intestinal epithelial cells infected with Salmonella enterica serovars following pre-treatment separately with soluble plantain NSP and acidic or neutral polysaccharide fractions of plantain NSP, each compared with saline vehicle. Bacterial adherence and invasion were assessed by gentamicin protection assay. In vivo dietary supplementation with plantain NSP 50 mg/d reduced invasion by S.Typhimurium, as reflected by viable bacterial counts from splenic tissue, by 98.9% (95% CI, 98.1–99.7; P<0.0001). In vitro studies confirmed that plantain NSP (5–10 mg/ml) inhibited adhesion of S.Typhimurium 4/74 to a porcine epithelial cell-line (73% mean inhibition (95% CI, 64–81); P<0.001) and to primary chick caecal crypts (82% mean inhibition (95% CI, 75–90); P<0.001). Adherence inhibition was shown to be mediated via an effect on the epithelial cells and Ussing chamber experiments with ex-vivo human ileal mucosa showed that this effect was associated with increased short circuit current but no change in electrical resistance. The inhibitory activity of plantain NSP lay mainly within the acidic/pectic (homogalacturonan-rich) component. Supplementation of chick feed with plantain NSP was well tolerated and shows promise as a simple approach for reducing invasive salmonellosis

Inhibition of NF-kB 1 (NF-kBp50) by RNA interference in chicken macrophage HD11 cell line challenged with Salmonellaenteritidis

The NF-kB pathway plays an important role in regulating the immunity response in animals. In this study, small interfering RNAs (siRNA) were used to specifically inhibit NF-kB 1 expression and to elucidate the role of NF-kB in the signal transduction pathway of the Salmonella challenge in the chicken HD11 cell line. The cells were transfected with either NF-kB 1 siRNA, glyceraldehyde 3-phosphate dehydrogenase siRNA (positive control) or the negative control siRNA for 24 h, followed by Salmonella enteritidis (SE) challenge or non-challenge for 1 h and 4 h. Eight candidate genes related to the signal pathway of SE challenge were selected to examine the effect of NF-kB 1 inhibition on their expressions by mRNA quantification. The results showed that, with a 36% inhibition of NF-kB 1 expression, gene expression of both Toll-like receptor (TLR) 4 and interleukin (IL)-6 was consistently and significantly increased at both 1 h and 4 h following SE challenge, whereas the gene expression of MyD88 and IL-1β was increased at 1 h and 4 h, respectively. These findings suggest a likely inhibitory regulation by NF-kB 1, and could lay the foundation for studying the gene network of the innate immune response of SE infection in chickens

Examining the role of health literacy in online health information

The internet has radically changed the way people obtain and interact with information about diseases, treatments, and conditions. Yet, our understanding of how people access and use health information to make decisions- in other words, their health literacy- has not progressed. The overall aim of this thesis is to assess the extent to which health literacy is a valid and useful construct for policy and practice related to online health resources. A mixed-methods research programme of five studies was undertaken, influenced by realist evaluation methodology. First, to ascertain engagement with user-generated online health content (UGC) in the UK, analysis of a large European survey was undertaken. Then, the uncertainty regarding the relationship between health literacy and outcomes was addressed by a systematic review and qualitative analysis of health literacy measures. Results of these two studies informed interviews carried out with 13 âkey informantsâ: policymakers and primary care clinicians in the UK with a particular interest in health literacy and/or online information. A systematic review, incorporating a traditional narrative review and a realist review, evaluated existing trials addressing how effects of online resources vary by health literacy level. Finally, data were analysed from a feasibility randomized controlled trial, comparing usage and outcomes of accessing a âpersonal experiencesâ- based asthma website (representing curated user-generated content) versus a âfacts and figuresâ- based website. Participant health literacy was assessed using an index identified from the systematic review of measures, and website usage was tracked. Approximately 25% of UK internet users engage with UGC at least monthly. The most frequent users were younger, more likely to be male, and to be carers for someone with a long-term illness. Three themes were identified from health literacy measurement: âappropriate health decisionsâ, âability to obtain healthcare servicesâ, and âconfidenceâ. Key informants noted the lack of clarity about how health literacy influences outcomes, and suggested that personal preferences and digital access and skills may be more relevant than health literacy for policy and practice. Existing trials of online resources in which participant health literacy was measured were mostly at high risk of bias; some possible explanations of how these interventions should work in people with low health literacy were that they may experience higher data entry burden related to chronic diseases, and that they may prefer simulated face-to-face communication. Finally, there were no differences between health literacy groups in the feasibility trial regarding usage or outcomes related to either the âfacts and figuresâ or âpersonal experiencesâ websites. Taken together, these results question the validity and appropriateness of health literacy as a key objective or consideration in the development or use of online resources. While health literacy has value as a general idea, this thesis demonstrates that it may no longer be the right construct to guide intervention development and implementation to improve health outcomes.</p

Examining the role of health literacy in online health information

The internet has radically changed the way people obtain and interact with information about diseases, treatments, and conditions. Yet, our understanding of how people access and use health information to make decisions- in other words, their health literacy- has not progressed. The overall aim of this thesis is to assess the extent to which health literacy is a valid and useful construct for policy and practice related to online health resources. A mixed-methods research programme of five studies was undertaken, influenced by realist evaluation methodology. First, to ascertain engagement with user-generated online health content (UGC) in the UK, analysis of a large European survey was undertaken. Then, the uncertainty regarding the relationship between health literacy and outcomes was addressed by a systematic review and qualitative analysis of health literacy measures. Results of these two studies informed interviews carried out with 13 ‘key informants’: policymakers and primary care clinicians in the UK with a particular interest in health literacy and/or online information. A systematic review, incorporating a traditional narrative review and a realist review, evaluated existing trials addressing how effects of online resources vary by health literacy level. Finally, data were analysed from a feasibility randomized controlled trial, comparing usage and outcomes of accessing a ‘personal experiences’- based asthma website (representing curated user-generated content) versus a ‘facts and figures’- based website. Participant health literacy was assessed using an index identified from the systematic review of measures, and website usage was tracked. Approximately 25% of UK internet users engage with UGC at least monthly. The most frequent users were younger, more likely to be male, and to be carers for someone with a long-term illness. Three themes were identified from health literacy measurement: ‘appropriate health decisions’, ‘ability to obtain healthcare services’, and ‘confidence’. Key informants noted the lack of clarity about how health literacy influences outcomes, and suggested that personal preferences and digital access and skills may be more relevant than health literacy for policy and practice. Existing trials of online resources in which participant health literacy was measured were mostly at high risk of bias; some possible explanations of how these interventions should work in people with low health literacy were that they may experience higher data entry burden related to chronic diseases, and that they may prefer simulated face-to-face communication. Finally, there were no differences between health literacy groups in the feasibility trial regarding usage or outcomes related to either the ‘facts and figures’ or ‘personal experiences’ websites. Taken together, these results question the validity and appropriateness of health literacy as a key objective or consideration in the development or use of online resources. While health literacy has value as a general idea, this thesis demonstrates that it may no longer be the right construct to guide intervention development and implementation to improve health outcomes.</p

User-generated online health content: A survey of internet users in the United Kingdom

The production of health information has begun to shift from commercial organizations to health care users themselves. People increasingly go online to share their own health and illness experiences and to access information others have posted, but this behavior has not been investigated at a population level in the United Kingdom. Objective, this study aims to explore access and production of user-generated health content among UK Internet users and to investigate relationships between frequency of use and other variables. Methods, we undertook an online survey of 1000 UK Internet users. Descriptive and multivariate statistical analyses were used to interpret the data. Results, nearly one-quarter of respondents (23.7%, 237/1000) reported accessing and sharing user-generated health content online, whereas more than 20% (22.2%, 222/1000) were unaware that it was possible to do this. Respondents could be divided into 3 groups based on frequency of use: rare users (78.7%, 612/778) who accessed and shared content less than weekly, users (13.9%, 108/778) who did so weekly, and superusers (7.5%, 58/778) who did so on a daily basis. Superusers were more likely to be male (P<.001) and to be employed (P<.001), but there were no differences between the groups with respect to educational level (P=.99) or health status (P=.63). They were more likely to use the Internet for varied purposes such as banking and shopping (P<.001). Conclusions. Although this study found reasonably widespread access of user-generated online health content, only a minority of respondents reported doing so frequently. As this type of content proliferates, superusers are likely to shape the health information that others access. Further research should assess the effect of user-generated online content on health outcomes and use of health services by Internet users