Online recommenders' anthropomorphism improves user response to hedonic and benefit-based product appeals through the recommenders' perceived ability to learn.

Previous studies reveal the limited effectiveness of benefit-based and hedonic-based product recommendations provided by online recommenders, and recommender anthropomorphism is considered a remedy. This paper aims to investigate the positive effect of anthropomorphism by involving the online recommender's perceived ability to learn as a mediator. Based on schema congruity theory, perceived benefit/hedonic appeals appropriateness is considered a dependent variable. In Study 1, subtle anthropomorphic cues within an online recommender had a positive effect on perceived benefit-appeals appropriateness through the perceived ability to learn. Study 2 demonstrated the positive relationship between perceived anthropomorphism and perceived hedonic-appeal appropriateness, with the mediating role of the perceived ability to learn. The results advance the knowledge about consumer response to online recommenders from the perspective of anthropomorphism and schema congruity theory. Marketers and consumer organizations are advised on how to deal with online recommender systems providing benefit and hedonic appeals.

Parents as Advocates for Pediatric Palliative Care.

Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent-provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.

["Long-haul COVID": An opportunity to address the complexity of post-infectious functional syndromes]. / « COVID long ¼ : une opportunité pour approcher la complexité des syndromes fonctionnels post-infectieux.

In this work, we address the issue of prolonged symptoms following an infection by SARS-CoV-2, labeled "long COVID". This clinically unspecific syndrome must be put in perspective with the post-infectious syndromes known for a long time but ultimately poorly understood and little studied, qualified, for lack of convincing arguments for a unambiguous pathophysiology and better terms, as functional somatic syndromes. The clinical implications for clinical care ("holistic" work-up and care of patients), for research (need for truly "bio-psycho-social" investigations), and the social implications of "long COVID" (social construction of the syndrome through the experiences of patients exposed on social networks, inequalities in the face of the disease and its socioeconomic consequences) are considered. "Long COVID" must be view, because of its expected prevalence, as an opportunity to address the complexity of post-infectious (functional) syndromes, their risk factors, and the biological, psychological and social mechanisms underlying them.

Communicating Adverse Drug Reaction Insights Through Patient Organizations: Experiences from a Pilot Study in the Netherlands.

INTRODUCTION: To improve therapeutic decision making, it is crucial that information regarding adverse drug reactions reaches patients. It is not enough to disseminate such findings through regulatory and scientific channels; targeted efforts to reach patients are necessary. One possible avenue is to collaborate with patient organizations. OBJECTIVES: The aim of this pilot study was to explore how adverse drug reactions can be communicated through patient organizations. METHODS: A text describing a signal of levothyroxine and panic attacks was tailored to patients' needs, in terms of language, style and content, with emphasis placed on what to do when experiencing the symptoms described. The signal was communicated via the Dutch thyroid organization's digital newsletter, social media channels, website and print magazine. RESULTS: The digital newsletter was distributed to around 5000 subscribers. On Facebook, 13,820 people viewed the message, with 2346 clicks in the message, indicating an intention to read the whole post. The interactions on social media were positive, and the tone was respectful. CONCLUSION: Patient organizations can help enable effective communication of adverse drug reactions to a relevant audience. The social media post generated more engagement than other communications from the patient organization, indicating a strong interest in this information. The additional patient experiences that were shared in the comments on social media further strengthened the original signal and its relevance to patients, creating an interesting feedback loop. The favourable experiences in this study support further consideration and exploration of this approach to communicate adverse drug reactions to patients.

Collaboration between academics, small pharmaceutical company and patient organizations in the development of a new formulation of cysteamine in nephropathic cystinosis: A successful story.

Rare diseases usually concern small and disseminated population. Implementing clinical research with the right design, outcomes measures and the recruitment of patients are challenges. Collaborations, training and multidisciplinary approach are often required. In this article, we provide an overview of a successful collaboration in nephropathic cystinosis (NC), focusing on what was the key of success, the interactions between academics, the pharmaceutical company and patients organizations. NC is considered as a very rare disease. In 2010, a new formulation of cysteamine, the only available treatment to improve renal outcome of the disease, was proposed by a small American company. Studies were implemented in France under the coordination of an expert of the disease and the clinical investigation center of Lyon. The collaboration resulted in a good recruitment and retention of the patients in the study and most of all in the availability of the new formulation in France. Patients could have facilitated the research by being involved in the early stages of the studies. Involving patients and public early in the process is particularly important in rare diseases as the patient is a great source of knowledge and has his own expectations. Priorities of research, design, conduct and reporting of clinical trials can be defined in collaboration with adults but also with young patients or public, the first concerned in rare diseases. This concept is still to be developed and improved especially with paediatric patients.

Patients' organizations in rare diseases and involvement in drug information: Illustrations with LMC France, the French Association of Chronic Myeloid leukemia.

There are few areas in medicine in which patient-parent advocacy groups play such a central and prominent role as in the field of rare diseases. As illustrated by the French Association of Chronic Myeloid Leukemia (LMC France), its contribution is not only focused on its role as participants or key informant related to clinical studies but also on drug information and drug safety. The discovery of tyrosine kinase inhibitors against the BCR-ABL1 oncogenic fusion protein has revolutionized the management of CML, becoming a chronic illness rather than a life-threatening disease. Because ensuring ongoing well-being requires some knowledge, LMC France has built, in synergy with healthcare professionals from its scientific council, a CML-specific, patient-friendly knowledge base including resources and knowledge related to drug information (drug development, generics, pharmacovigilance) and drug safety using several educational tools such as videos, CML support, and CML drug sheets. To disseminate more largely, an e-university learning for regional key informants from LMC France and also CML patients and their caregivers was launched, including a large resources related to drug information and drug safety in synergy with hematologists and clinical pharmacologists.

Industry funding of patient and health consumer organisations: systematic review with meta-analysis.

OBJECTIVE: To investigate pharmaceutical or medical device industry funding of patient groups. DESIGN: Systematic review with meta-analysis. DATA SOURCES: Ovid Medline, Embase, Web of Science, Scopus, and Google Scholar from inception to January 2018; reference lists of eligible studies and experts in the field. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Observational studies including cross sectional, cohort, case-control, interrupted time series, and before-after studies of patient groups reporting at least one of the following outcomes: prevalence of industry funding; proportion of industry funded patient groups that disclosed information about this funding; and association between industry funding and organisational positions on health and policy issues. Studies were included irrespective of language or publication type. REVIEW METHODS: Reviewers carried out duplicate independent data extraction and assessment of study quality. An amended version of the checklist for prevalence studies developed by the Joanna Briggs Institute was used to assess study quality. A DerSimonian-Laird estimate of single proportions with Freeman-Tukey arcsine transformation was used for meta-analyses of prevalence. GRADE (Grading of Recommendations Assessment, Development, and Evaluation) was used to assess the quality of the evidence for each outcome. RESULTS: 26 cross sectional studies met the inclusion criteria. Of these, 15 studies estimated the prevalence of industry funding, which ranged from 20% (12/61) to 83% (86/104). Among patient organisations that received industry funding, 27% (175/642; 95% confidence interval 24% to 31%) disclosed this information on their websites. In submissions to consultations, two studies showed very different disclosure rates (0% and 91%), which appeared to reflect differences in the relevant government agency's disclosure requirements. Prevalence estimates of organisational policies that govern corporate sponsorship ranged from 2% (2/125) to 64% (175/274). Four studies analysed the relationship between industry funding and organisational positions on a range of highly controversial issues. Industry funded groups generally supported sponsors' interests. CONCLUSION: In general, industry funding of patient groups seems to be common, with prevalence estimates ranging from 20% to 83%. Few patient groups have policies that govern corporate sponsorship. Transparency about corporate funding is also inadequate. Among the few studies that examined associations between industry funding and organisational positions, industry funded groups tended to have positions favourable to the sponsor. Patient groups have an important role in advocacy, education, and research, therefore strategies are needed to prevent biases that could favour the interests of sponsors above those of the public. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42017079265.

Financial relationships between patient and consumer representatives and the health industry: A systematic review.

BACKGROUND: Patients and consumers are increasingly engaged in health policymaking, research and drug regulation. Having financial relationships with the health industry creates situations of conflicts of interest (COI) and might compromise their meaningful and unbiased participation. OBJECTIVE: To synthesize available evidence on the financial relationships between the health industry and patient and consumer representatives and their organizations. METHODS: We systematically searched MEDLINE and EMBASE. We selected studies and abstracted data in duplicate and independently. We reported on outcomes related to financial relationships of individuals with, and/or funding of organizations by the health industry. RESULTS: We identified a total of 14 510 unique citations, of which 24 reports of 23 studies were eligible. Three studies (13%) addressed the financial relationship of patient and consumer representatives with the health industry. Of these, two examined the proportion of public speakers in drug regulatory processes who have financial relationships; the proportions in the two studies were 25% and 19% respectively. Twenty studies (87%) addressed funding of patient and consumer organizations. The median proportion of organizations that reported funding from the health industry was 62% (IQR: 34%-69%) in questionnaire surveys, and 75% (IQR: 58%-85%) in surveys of their websites. Among organizations for which there was evidence of industry funding, a median proportion of 29% (IQR: 27%-44%) acknowledged on their websites receiving that funding. CONCLUSION: Financial relationships between the health industry and patient and consumer representatives and their organizations are common and may not be disclosed. Stricter regulation on disclosure and management is needed.

Recommendations for Preventing Child Sexual Abuse in Youth-Serving Organizations: Implications From an Australian Royal Commission Review of the Literature.

Evidence suggests that tens of millions of children and adolescents are involved in youth-serving organizations (YSOs) outside of their homes on a daily basis. Children's involvement with YSOs clearly offers a broad array of emotional, social, and personal development benefits. This involvement can, however, also be associated with a variety of safety risks, including the potential for child sexual abuse (CSA) victimization and the myriad short- and long-term consequences to its victims and their families. Recognizing the significance of CSA within YSOs, the Australian Royal Commission into Institutional Responses to Child Sexual Abuse funded a comprehensive review of the literature on risk and protective factors related to CSA in institutions. This yielded more than 400 primarily research articles from the United States, United Kingdom, and Australia, examining institutional CSA victims, perpetrators, and settings. Findings were provided regarding six specific types of institutional settings, including faith-based, early childhood education, childcare and schools, health care, out-of-home/foster care, and sport. This article is based on the findings of Kaufman and Erooga's comprehensive literature review and Royal Commission findings. It provides a brief review of critical risks associated with CSA victims, perpetrators, and organizational settings, as well as highlights risks particular to specific types of YSOs and risks that are present across these organizations. Optimal prevention directions and strategies are outlined in response to identified patterns of organizational risk. Recommendations for YSO policy enhancements are also provided to complement the article's prevention focus. Finally, suggestions are offered for future research directions to foster the development of an evidence-based foundation for work in this area.

Examining Physician Interactions with Disease Advocacy Organizations.

Disease advocacy organizations (DAOs) have traditionally focused on raising awareness of rare diseases, providing educational resources to patients, and supporting patients and families. Previous research has described how scientists collaborate with DAOs, but few empirical data are available regarding the extent to which physicians interact with DAOs and how those interactions impact patient care. We conducted a national survey of 230 board-certified pediatric neurologists to assess their engagement with DAOs and their beliefs about the impact of DAOs on patient care. In that context, we evaluated a set of 24 items describing interactions between physicians and DAOs. Exploratory factor analysis produced a 19-item model capturing four types of physician-DAO engagement: (1) accessing or distributing DAO-produced materials (6 items, alpha = 0.80); (2) consulting on DAO activities (5 items, alpha = 0.81); (3) collaborating with DAOs on research activities (6 items, alpha = 0.80); and (4) co-producing scholarly materials with DAOs (2 items, alpha = 0.80). Our data indicate that physicians engage with DAOs in more frequent and diverse ways than has been previously reported. Almost all physicians in our sample had interacted directly with a DAO in some way, from low-effort activities such as visiting a DAO's website to deeper forms of engagement including coauthoring journal articles. These findings may provide a framework for bioethicists to characterize the nature and extent of physician interactions with advocacy organizations, which is critical for evaluating the ethical implications of physician-DAO relationships.

How do health consumer organisations in Australia manage pharmaceutical industry sponsorship? A cross-sectional study.

Objective The aim of this study was to investigate how health consumer organisations manage their relationships with the pharmaceutical industry in Australia. Methods We identified 230 health consumer organisations that received pharmaceutical industry support from 2013 to 2016 according to reports published by Medicines Australia, the industry trade association. A random sample of 133 organisations was selected and their websites assessed for financial transparency, policies governing corporate sponsorship and evidence of potential industry influence. Results In all, 130 of the 133 organisations evaluated received industry funding. Of these 130, 68 (52.3%; 95% confidence interval (CI) 43.4-61.1%) disclosed this funding. Nearly all (67; 98.5%) reported the identity of their industry donors, followed by uses (52.9%), amount (13.2%) and proportion of income from industry (4.4%). Less than one-fifth (24/133; 18.0%; 95% CI 11.9-25.6%) had publicly available policies on corporate sponsorship. Six organisations (7.2%; 95% CI 2.7-15.1%) had board members that were currently or previously employed by pharmaceutical companies, and 49 (36.8%; 95% CI 28.6-45.6%) had company logos, web links or advertisements on their websites. Conclusion Industry-funded health consumer organisations in Australia have low transparency when reporting industry funding and few have policies governing corporate sponsorship. Relationships between health consumer organisations and the industry require effective actions to minimise the risks of undue influence. What is known about this topic? Pharmaceutical industry funding of health consumer organisations is common in the US and Europe, yet only a minority of such organisations publicly disclose this funding and have policies regulating their relationships with industry. What does this paper add? Industry-funded health consumer organisations in Australia have inadequate financial transparency and rarely have policies addressing corporate funding. Organisations that have received more industry funding are more likely to report it publicly. What are the implications for practitioners? Robust policies addressing corporate sponsorship and increased transparency are needed to maintain the independence of health consumer organisations. Governments may also consider regulating non-profit organisations to ensure public reporting of funding sources.

Sports participation in sport clubs, gyms or public spaces: How users of different sports settings differ in their motivations, goals, and sports frequency.

BACKGROUND: To develop targeted policy strategies to increase sports participation, more insight is needed into the behavioural patterns and preferences of users of different club-organized (i.e., sports clubs) and non-club organized (i.e., gyms, health centres or swimming pools) or informal sports settings such as public spaces. This study investigates 1) how users of different settings differ regarding self-determined motivations and goals, and sociodemographic and sports-related characteristics, and 2) how the association of motivations and goals with sports participation may differ between users of different sports settings. METHODS: Data were collected through online surveys among Dutch adults aged 18-80 years (N = 910). Ordinal regression analyses were used to investigate the effects of sports settings, the level of self-determined motivations and goals, and interaction effects of motivations and goals with different sports settings, on sports frequency. RESULTS: Users of different sports settings differed in their personal characteristics, motivations and goals. In general, controlled motivations were negatively associated with sports frequency (B = -0.46). However, among club members, extrinsic goals related to image (B = 0.44), as well as intrinsic goals related to skill development (B = 0.40) and social affiliation (B = 0.47) had significant positive associations with sports frequency. Health-related goals significantly increased sports frequency among users of informal settings, such as public spaces. CONCLUSION: The association of motivational variables with sports participation differs between settings. This implies that sports frequency is higher when participants engage in settings that better fit their motivations and goals. Because of the growing importance of informal and flexible settings and health goals, professionals in the sports and health domains should take into account the motivations, goals and needs of different target groups who (want to) use unorganized, informal sports settings including public spaces.

A buyers' club to improve access to hepatitis C treatment for vulnerable populations.

Hepatitis C is a potentially fatal viral infection that mainly affects vulnerable patient groups. Given the high efficacy of the new direct-acting antivirals (DAAs), the World Health Organization (WHO) aims to eliminate viral hepatitis as a global health threat by 2030. However, due to the high cost of DAAs, this recommendation has put significant pressure on the budgets of countries with mandatory health insurance, such as Switzerland. There are particular challenges related to populations with low socioeconomic status or without residence permits who might not be covered by health insurance, or who forgo health care for economic reasons. This article discusses some of the key issues on this topic, such as reaching the populations most at risk from the hepatitis C virus (HCV) infection, and improving access to care and treatment for underserved, uninsured populations. We suggest a personal importation scheme for unapproved generics of DAA medications, and the use of a buyers' club as a strategy for improving universal access to hepatitis C medicines among vulnerable populations such as uninsured patients, in order to achieve the WHO goals with minimal disruption of the conventional, patent-based business model.

[The role of consumer organisations in nutritional education]. / Papel de las organizaciones de consumidores en la alfabetización alimentaria de la población.

OBJECTIVES: to gain a better understanding about consumers in order to be able to inform them, improve their protection and promote their responsibility, emphasizing the role of consumer organizations in improving the food literacy of the Spanish population. METHODS: more than 2,000 families from all the Autonomous Regions of Spain participated in the "Survey on consumer habits 2016", which aimed to better understand the profile of the new Spanish consumer and encourage responsible consumption. We analysed consumer habits, factors that influence purchase and level of information of consumers. RESULTS: some 65% of consumers choose supermarkets as their usual place of purchase; the purchase of fresh products is imposed on the rest. The data reflect dietary habits of citizens are less healthy than recommended and little knowledge about food allergen-free, ecological or transgenic foods. About 75% acknowledge that the economic situation forced them to change partially consumption and food habits. When selecting a product, people value the most quality and price, factors that together with the proximity of the point-of-purchase influence the choice of place of purchase. 71% of consumers say they look for information about products before buying them and find it on labels. They value information on expiration date, ingredients, price, place of origin and nutritional information. Only 71% difference between expiration date and preferential consumption. CONCLUSIONS: for a consumer association, nutrition education should not only contemplate the dissemination of information about food and nutrients, but also provide tools to know what to do and how to act to improve nutrition, creating environments that provide good food options and capabilities that allow to individuals, institutions and companies to commit to adopting healthier practices.

Objetivos: conocer mejor al consumidor para poder informarle, mejorar su protección y fomentar su responsabilidad, incidiendo en el papel de las organizaciones de consumidores en la alfabetización alimentaria de la población española. Métodos: más de 2.000 familias de todas las comunidades autónomas participaron en la Encuesta sobre hábitos de consumo 2016, cuyo objetivo era conocer mejor el perfil del nuevo consumidor español y fomentar el consumo responsable. Se analizan los hábitos de consumo, los factores que influyen en la compra y el nivel de información de consumidores. Resultados: el 65% de los consumidores elige el supermercado como lugar de compra habitual; la compra de productos frescos se impone al resto. Los datos reflejan hábitos alimentarios de los ciudadanos menos saludables de lo recomendable y un bajo conocimiento sobre alimentos libres de alérgenos, ecológicos o transgénicos. El 75% reconoce que la situación económica le ha obligado a cambiar en parte sus hábitos de consumo y alimentación. Lo más valorado a la hora de seleccionar un producto son la calidad y el precio, factores que junto con la proximidad del establecimiento condicionan la elección del lugar de compra. El 71% de los consumidores dicen buscar información sobre productos antes de comprarlos y encontrarla en el etiquetado. Valoran la información sobre caducidad, ingredientes, precio, lugar de origen e información nutricional. Solo el 71% diferencia entre fecha de caducidad y de consumo preferente. Conclusiones: para una asociación de consumidores, la educación nutricional no solo debe contemplar la difusión de información acerca de alimentos y nutrientes, sino también proporcionar herramientas para saber qué hacer y cómo actuar para mejorar la nutrición, creando entornos que faciliten buenas opciones alimentarias y capacidades que permitan a individuos, instituciones y empresas comprometerse con la adopción de prácticas más saludables.

Consumer agency in cannabis supply - Exploring auto-regulatory documents of the cannabis social clubs in Spain.

BACKGROUND: There is growing experience with the not-for-profit, consumer-driven cannabis social club (CSC) model that builds on self-supply, self-organization and harm-reduction; these are principles upon which people who use drugs (PWUD) have been engaging for decades. Recent legalization of cannabis in a number of jurisdictions and the related challenges in regulating production, sale, taxation and health-related matters have raised interest in non-commercial models of cannabis supply. The "codes of conduct" (CsoC) of CSC federations in Spain might reveal whether a consumer-based model could overcome these challenges. METHODS: To examine the content of the CSC auto-regulatory documents, an online search using key terms to identify the CsoC was conducted. Six documents were found; analysis of the main thematic categories and overarching themes was conducted. It was discussed how these corresponded to the areas of cannabis policy regulation and what the main limitations of the CSC model were. RESULTS: The CsoC detailed the rules for CSC administration, not-for-profit aims, "invitation only" and other conditions of membership, collective cultivation and security as well as for operation of the consumption venue and health-related initiatives. The themes in the CsoC overlapped with cannabis regulatory areas as outlined internationally. Concern over cannabis prices and potency was missing in the CsoC. The potential strengths of the CSC model might include safe environment for peer-delivered harm reduction practice, preventing illicit transactions, quality control, shifting economic surplus to the consumers and increased consumer responsibility. The limitations of the CSC model include high threshold, disguised motives, tax revenue and the risk of both under- and over-regulation. CONCLUSION: CSCs represent an opportunity to enhance consumer agency and responsibility. The right "to be self-supplied" with psychoactive substances can be granted to consumer associations - but authorities need to provide a framework to facilitate this voluntary self-organization, including minimum standards around public health and safety, and to involve consumers in the development of these regulations.

Web-based Survey Data Collection With Peer Support and Advocacy Organizations: Implications of Participatory Methods.

BACKGROUND: The 2012 National Survey of Peer-Run Organizations is one of the first to survey a nationally representative sample of mental health peer-run organizations, nonprofit venues for support and advocacy which are defined by people with psychiatric histories being in positions of authority and control. OBJECTIVES: This paper describes data collection methods and demonstrates how participatory strategies to involve people with psychiatric histories intersected with Internet research to achieve study aims. METHODS: People with psychiatric histories were involved in designing and implementing a web-based survey to collect data on peer-run organizations' operations and views on national policy. Participatory approaches were used throughout design, data collection analysis, and dissemination. CONCLUSIONS: The extensive involvement of people with psychiatric histories in project design and implementation were important strategies that contributed to this study's success.