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What Medical Crowdfunding Campaigns Can Tell Us About Local Health System Gaps and Deficiencies: Exploratory Analysis of British Columbia, Canada

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2020-05-22
Abstract: 

Background: There are a range of perceived gaps and shortcomings in the publicly funded Canadian health system. These include wait times for care, lack of public insurance coverage for dental care and pharmaceuticals, and difficulties accessing specialist care. Medical crowdfunding is a response to these gaps where individuals raise funds from their social networks to address health-related needs.

Objective: This study aimed to investigate the potential of crowdfunding data to better understand what health-related needs individuals are using crowdfunding for, how these needs compare with the existing commentary on health system deficiencies, and the advantages and limitations of using crowdfunding campaigns to enhance or augment our understanding of perceived health system deficiencies.

 

Methods: Crowdfunding campaigns were scraped from the GoFundMe website. These campaigns were then limited to those originating in the metropolitan Vancouver region of two health authorities during 2018. These campaigns were then further limited to those raising funds to allow the treatment of a medical problem or related to needs arising from ill health. These campaigns were then reviewed to identify the underlying health issue and motivation for pursuing crowdfunding.

 

Results: We identified 423 campaigns for health-related needs. These campaigns requested CAD $8,715,806 (US $6,088,078) in funding and were pledged CAD $3,477,384 (US $2,428,987) from 27,773 donors. The most common underlying medical condition for campaign recipients was cancer, followed by traumatic injuries from collisions and brain injury and stroke. By far, the most common factor of motivation for crowdfunding was seeking financial support for wages lost because of illness (232/684, 33.9%). Some campaigns (65/684, 9.5%) sought help with purchasing medical equipment and supplies; 8.2% (56/684) sought to fund complementary, alternative, or unproven treatments including experimental interventions; 7.2% (49/684) sought financial support to cover travel-related costs, including in-province and out-of-province (49/684, 7.2%) travel; and 6.3% (43/684) campaigns sought help to pay for medication.

 

Conclusions: This analysis demonstrates the potential of crowdfunding data to present timely and context-specific user-created insights into the perceived health-related financial needs of some Canadians. Although the literature on perceived limitations of the Canadian health system focuses on wait times for care and limited access to specialist services, among other issues, these campaigners were much more motivated by gaps in the wider social system such as costs related to unpaid time off work and travel to access care. Our findings demonstrate spatial differences in the underlying medical problems, motivations for crowdfunding, and success using crowdfunding that warrants additional attention. These differences may support established concerns that medical crowdfunding is most commonly used by individuals from relatively privileged socioeconomic backgrounds. We encourage the development of new resources to harness the power of crowdfunding data as a supplementary source of information for Canadian health system stakeholders.

Document type: 
Article
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Mental health treatment: Reaching more kids

Peer reviewed: 
No, item is not peer reviewed.
Date created: 
2020
Abstract: 

Background: Nearly 70% of children who are in need of specialized mental health services do not access them. We set out to identify effective self-delivered interventions as a way to help bridge the gap between those in need and those being serviced.

Methods: We used systematic review methods to identify randomized control trials (RCTs) evaluating self-delivered treatments. After applying our rigorous inclusion criteria, we accepted five RCTs evaluating five treatment interventions.

Results: Three self-directed family interventions reduced anxiety diagnoses and symptoms for school age children. One self-directed parenting intervention reduced ADHD diagnoses for school age children. Additionally, one self-directed youth invention reduced depression symptoms for adolescents.

Conclusions: Strong research evidence supports the use of self-directed treatments to address three common childhood mental disorders. Greater use of these interventions can expand the number of children who are reached with effective treatments.

Improving Adolescent Access to Contraception in Sub-Saharan Africa: A Review of the Evidence

Author: 
Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2020-03
Abstract: 

Global commitments to and support for sexual and reproductive health (SRH) have increased over the past 10 years. Adolescent access to contraception has emerged as a crucial area of focus within this agenda, particularly in sub-Saharan Africa (SSA), where there is the greatest unmet need for contraception. Yet there is little synthesized knowledge around adolescents‘ use and knowledge of, and access to contraception in SSA. This review summarizes and analyzes literature on the subject in order to determine implications for policy and program development, and to guide future research. The majority of existing research focuses on South Africa, with numerous studies from East Africa also present. Most of this research is qualitative, with few mixed method studies, and only one randomized control trial of an intervention.  Findings from multiple countries confirm that adolescents in SSA have a significant unmet need for contraception. Most adolescents get their information about contraception from the media or peers. Persistent myths regarding effectiveness and side effects, as well as cultural and gender norms, impede access to and demand for contraception. Other determinants of access and use include education level and socio-economic status. As a result, intervention evaluations note that cultural barriers and socio-economic conditions limit SRH outcomes.

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Article
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Trajectories of Retention in Opioid Agonist Therapy in a Canadian Setting

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2020-02-09
Abstract: 

Background: Long-term engagement in opioid agonist therapy (OAT) has been consistently associated with reduced risk for morbidity and mortality in people with opioid use disorder (OUD). However, the dynamic nature of engagement/disengagement in OUD care for over time is poorly captured by traditional metrics. We characterized long-term longitudinal trajectories of engagement in OAT in Vancouver, Canada, between 2005 and 2018.

Methods: Data were derived from two community-recruited prospective cohorts of people who use drugs. Retention in OAT was defined as self-reported enrolment in OAT for two consecutive follow-up periods (an approximately six-month retention interval). We used latent class growth analysis to identify OAT engagement trajectories during the first five years after OAT initiation and multivariable logistic regression to evaluate predictors of trajectory group membership.

Results: We identified four OAT retention trajectories among 438 OAT initiators: “consistently high” (36%), “consistently low” (23%), “increasing” (23%), and “decreasing” (15%). Employment was a significant cross-cutting predictor of membership of all sub-optimal OAT engagement patterns compared to consistently high trajectories. We also found that initiating OAT after 2014 (when regulatory changes to the provincial OAT program were introduced) was associated with the “consistently low” engagement group relative to others.

Conclusions: We identified four distinct OAT engagement trajectories in Vancouver, Canada, with employment being a common predictor of sub-optimal care trajectories, suggesting the need to explore alternative OAT models to address employment-related barriers.  Care trajectory analysis could help inform tailored interventions to specific populations of people with OUD at specific time points to improve engagement in OAT, and decrease opioid-related morbidity and mortality.

Document type: 
Article

Analyzing Big Tobacco’s Global Youth Marketing Strategies and Factors Influencing Smoking Initiation by Nigeria Youths Using the Theory of Triadic Influence

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2020-03-20
Abstract: 

Background: Major transnational tobacco companies (TTCs) have identified Nigeria, the seventh most populous country in the world, as a market with a significant revenue potential, given its high youth population and growing gross domestic product (GDP). This research analyses tobacco industry-related strategies and activities targeting youth (aged 15 to 24 years) in Nigeria involving existing, but most importantly, future tobacco users. Nigeria is the focus of this study because the tobacco industry has viewed it as a major emerging market since the 1990s. Successful marketing in Nigeria could provide the industry with a template for similar initiatives in other emerging markets in low- and middle-income countries.

Methods: The research began with a systematic review of secondary literature to determine how the tobacco industry has targeted youth globally and factors contributing to youth smoking initiation. It then used the theory of triadic influence as a heuristic framework to categorize the various factors influencing youth smoking initiation and industry strategies related to increasing tobacco use among youths. Quotations from internal tobacco industry documents were organized into the three streams of the theory of triadic influence: biology/personality, social and cultural/environmental streams. A total of 12 interviews were conducted with 6 policymakers and governmental officials, 2 civil society organization representatives, a high school principal, a journalist and 2 researchers to investigate how the tobacco industry had targeted youth in Nigeria.

Results: The findings indicate that TTCs have actively targeted youth in Nigeria since the 1990s, focusing on changing behaviour through the biology/personality, social and environmental/ cultural streams.

Conclusion: The study suggests that Nigeria implement and vigorously enforce its 2015 National Tobacco Control Bill as well as a package of other measures to prevent tobacco companies targeting youth.

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Article
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Application of Protection Motivation Theory to Clinical Trial Enrolment for Pediatric Chronic Conditions

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2020-03-16
Abstract: 

Background

Parents of children living with chronic but manageable conditions hope for improved therapies or cures, including Advanced Therapy Medicinal Products (ATMPs). Multiple pediatric clinical trials for ATMPs are underway, but the risk profile of ATMPs for chronic conditions is largely unknown and likely different than for terminal pediatric illnesses. Applying Protection Motivation Theory modified to the context of pediatric ATMP clinical trial enrollment, our study analyses information needs of parents of children living with chronic manageable conditions: Type 1 Diabetes (T1D) or Inherited Retinal Diseases (IRD).

Methods

We conducted semi-structured interviews with 15 parents of children living with T1D and 14 parents of children living with an IRD about: a) family background and the diagnostic experience; b) awareness of gene and stem cell therapy research and clinical trials for T1D and IRD; c) information sources on trials and responses to that information; d) attitudes to trial participation, including internationally; e) understanding of trial purpose and process; and f) any experiences with trial participation. We then discussed a pediatric ATMP clinical trial information sheet, which we developed with experts. We applied directed qualitative content analysis, based on PMT, to examine the information preferences of parents in deciding whether to enrol their children in stem cell or gene therapy clinical trials.

Results

Parents balanced trial risks against their child’s ability to cope with the chronic condition. The better the child’s ability to cope with vision impairment or insulin management, the less likely parents were to assume trial risks. Conversely, if the child struggled with his/her vision loss, parents were more likely to be interested in trial participation, but only if the risks were low and likelihood for potential benefit was high.

Conclusions

Fear of adverse events as part of threat appraisal was the predominant consideration for parents in considering whether to enroll their child living with a manageable, chronic condition in a pediatric clinical trial of an ATMP. This consideration outweighed potential benefits and severity of their child’s condition. Parents called for available safety data and fulsome communication processes that would enable them to make informed decisions about clinical trial enrolment on behalf of their children.

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Article
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"Tremendous Financial Burden": Crowdfunding for Organ Transplantation Costs in Canada

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2019-12-20
Abstract: 

Online crowdfunding platforms such as GoFundMe are used to raise funds for health-related expenses associated with medical conditions such as organ transplantation. By investigating crowdfunding in Canadian organ transplantation, this study aimed to increase understanding of the motivations and outcomes of organ transplantation crowdfunding. Canadian liver and kidney transplantation campaigns posted to GoFundMe between May 30 & 31 2018 were identified and after exclusion, 258 kidney and 171 liver campaigns were included in study. These campaigns were coded for: worthiness of the campaign recipient, requested financial and non-monetary contributions, how monetary donations would be spent, and comments on the Canadian health system, among others. Results suggest Canadian organ donors, transplant candidates, recipients, and their families and caregivers experience significant financial difficulties not addressed by the public health system. Living and medication costs, transportation and relocation expenses, and income loss were the expenses most commonly highlighted by campaigners. Liver campaigns raised nearly half their goal while kidney campaigns received 11.5% of their requested amount. Findings highlight disease burden and the use of crowdfunding as a response to the extraordinary costs associated with organ transplantation. Although crowdfunding reduces some financial burden, it does not do so equitably and raises ethical concerns.

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Article
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Who Is Ready to Bicycle? Categorizing and Mapping Bicyclists with Behavior Change Concepts

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2019-07-29
Abstract: 

Bicyclist categorizations have been developed to sort individuals into distinct groups based on shared traits, which can help researchers and practitioners understand complex patterns of bicycling behavior. Previous categorizations have focused on bicycle facility comfort, seasonal patterns of use, and behaviors and attitudes, but not on readiness for bicycling. We present the added-value of a categorization of bicyclists based on the stages of change feature of the Transtheoretical Model (TTM) and examine how this new categorization can contribute unique insights for practice through novel behavioral information and findings from mapping and spatial analysis. We use survey data from a sample of 2398 individuals from three medium-sized Canadian cities: Victoria and Kelowna in British Columbia, and Halifax, Nova Scotia. We categorize individuals into the five TTM stages of change according to three questions: intent to bicycle more, use of a bicycle in the past 12 months, and whether or not they usually use a bicycle to get around. One-third of respondents had not considered bicycling (Pre-contemplation) while one-fifth had begun considering or preparing to bicycle (Contemplation and Preparation) and two-fifths occasionally bicycled (Action). Only 5% regularly bicycled (Maintenance). Men, younger individuals, and residents of Kelowna and Victoria (compared to Halifax) were more likely to be in advanced readiness stages (Action and Maintenance). We used spatial statistical techniques to locate hotspots where there were disproportionately more Action-stage individuals as these could be areas where infrastructure improvements would likely be met with the greatest increase in bicycling; however, results suggested Action-stage individuals were dispersed geographically. We show that categorizing people as a function of readiness for change allows for characterization of populations that are likely to be beneficially impacted by policies to support bicycling. By focusing on readiness to bicycle, this approach could be used by practitioners to prioritize bicycling interventions.

Document type: 
Article

The Opioid Mortality Epidemic in North America: Do We Understand the Supply Side Dynamics of This Unprecedented Crisis?

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2020-02-17
Abstract: 

While there has been extensive attention to the ‘demand side’ – or use and adverse consequences, including mortality – of the ‘opioid crisis’ presently unfolding across North America, few considerations have focused on the supply side. This paper examines the supply side dynamics of this unprecedented public health phenomenon. We provide evidence for several interrelated supply-side elements that have contributed to the present public health crisis. We observe that initially, persistently high levels of prescription opioid availability and use exposed large proportions of the North American population to opioids, resulting in correspondingly high levels of medical and non-medical use (e.g., involving diversion). While various intervention measures to control prescription opioid availability and use have been implemented in recent years, leading to eventual reductions in opioid dispensing levels, these occurred late in the crisis’s evolution. Moreover, these supply reductions have not been met by corresponding reductions in opioid use or demand levels. These growing discrepancies between opioid demand and prescription-based sources have left major gaps in opioid supplies. In response to such supply gaps, highly potent and toxic illicit opioid products have rapidly proliferated across North America, and become a core driver of the dramatic spikes in opioid overdose fatality levels in recent years. These supply-related interrelations are corroborated by a corresponding increase in illicit opioid-related fatalities, which arose just as medical opioid supplies began to decrease in many jurisdictions. Improved analyses and understanding of the supply-side dynamics of the opioid crisis are urgently needed in order to inform future intervention and policy development. Meanwhile, the high mortality toll related to illicit, highly toxic opioid exposure requires sustained solutions, including supply-oriented measures (e.g., safer opioid distribution for at–risk users) towards improved public health protection.

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Article
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How Women Living With HIV React and Respond to Learning About Canadian Law That Criminalises HIV Non-disclosure: ‘How Do You Prove That You Told?’

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2019-01-09
Abstract: 

The Women, ART and the Criminalization of HIV Study is a qualitative, arts-based research study focusing on the impact of the HIV non-disclosure law on women living with HIV in Canada. The federal law requires people living with HIV to disclose their HIV-positive status to sexual partners before engaging in sexual activities that pose what the Supreme Court of Canada called a ‘realistic possibility of transmission’. Drawing on findings from seven education and discussion sessions with 48 women living with HIV regarding HIV non-disclosure laws in Canada, this paper highlights the ways in which women living with HIV respond to learning about the criminalisation of HIV non-disclosure. The most common emergent themes included: the way the law reproduces social and legal injustices; gendered experiences of intimate injustice; and the relationship between disclosure and violence against women living with HIV. These discussions illuminate the troubling consequences inherent in a law that is antithetical to the science of HIV transmission risk, and that fails to acknowledge the multiple barriers to HIV disclosure that women living with HIV experience. Women’s experiences also highlight the various ways the law contributes to their experiences of sexism, racism and other forms of marginalisation in society.

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Article
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