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

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

Crowdfunding for Complementary and Alternative Medicine: What Are Cancer Patients Seeking?

Background Complementary and alternative medicine (CAM) is increasingly being integrated into conventional medical care for cancer, used to counter the side effects of conventional cancer treatment, and offered as an alternative to conventional cancer care. Our aim is to gain a broader understanding of trends in CAM interventions for cancer and crowdfunding campaigns for these interventions. Methods GoFundMe campaigns fundraising for CAM were retrieved through a database of crowdfunding campaign data. Search terms were drawn from two National Institutes of Health lists of CAM cancer interventions and a previous study. Campaigns were excluded that did not match these or related search terms or were initiated outside of June 4th, 2018 to June 4th, 2019. Results 1,396 campaigns were identified from the US (n = 1,037, 73.9%), Canada (n = 165, 11.8%), and the UK (n = 107, 7.7%). Most common cancer types were breast (n = 344, 24.6%), colorectal (n = 131, 9.4%), and brain (n = 98, 7.0%). CAM interventions sought included supplements (n = 422, 30.2%), better nutrition (n = 293, 21.0%), high dose vitamin C (n = 276, 19.8%), naturopathy (n = 226, 16.2%), and cannabis products (n = 211, 15.1%). Mexico (n = 198, 41.9%), and the US (n = 169, 35.7%) were the most common treatment destinations. Conclusions These findings confirm active and ongoing interest in using crowdfunding platforms to finance CAM cancer interventions. They confirm previous findings that CAM users with cancer tend to have late stage cancers, cancers with high mortality rates, and specific diseases such as breast cancer. These findings can inform targeted responses where facilities engage in misleading marketing practices and the efficacy of interventions is unproven

TikTok and public health: a proposed research agenda.

TikTok is a short video sharing social media platform that has grown rapidly since its launch, amassing over 1 billion monthly global users as of September 2021. ► We argue that public health is served by paying urgent attention to the potential health- related implications of TikTok and suggest research agenda to inform decision- makers, health providers, researchers and the public. ► Specific research priorities include investigating health- harming product promotion, medical advice/illness portrayal, dis/misinformation spread, sensitive or hateful content dissemination, problematic usage or addiction and platform corporate activity

Selling cannabidiol products in Canada: A framing analysis of advertising claims by online retailers.

BACKGROUND: In Canada, the legalization of cannabis has enabled cannabidiol (CBD) to become a popular commercial product, increasingly used for medical or therapeutic purposes. There are currently over one thousand CBD products available globally, ranging from oil extracts to CBD-infused beverages. Despite increased usage and availability, the evidence supporting the medical efficacy of CBD is limited. Anecdotal evidence suggests CBD sellers represent their products for medical use through direct medical claims or advice, which in Canada, is not allowed under the Cannabis Act without Health Canada approval. However, it is not clear the extent of sellers making health claims or other strategies used to promote medical usage of CBD. The objective of this study is to determine how CBD sellers advertise their products online to consumers. METHODS: The product descriptions of 2165 CBD products from 70 websites selling CBD products for human consumption in Canada were collected from January 14th, 2020 to February 2nd, 2020 using an automated website scraper tool. A framing analysis was used to determine how CBD sellers frame their products to prospective customers. The specific medical conditions CBD is represented to treat and product forms were tabulated. RESULTS: CBD products are framed to prospective customer through three distinct frames: a specific cure or treatment (n = 1153), a natural health product (n = 872), and a product used in certain ways to achieve particular results (n = 1388). Product descriptions contained medical or therapeutic claims for 171 medical conditions and ailments, with 53.3% of products containing at least one claim. The most prevalent claims found in product descriptions were the ability to treat or manage pain (n = 824), anxiety (n = 609), and inflammation (n = 545). Claims were found for treating or managing serious and-life-threatening illnesses such as multiple sclerosis (n = 210), arthritis (n = 179), cancer (n = 169), Crohn's disease (n = 78), Parkinson's disease (n = 59), and human immunodeficiency virus (HIV) (n = 54). CBD most often came in oil/tincture/concentrate form (n = 755), followed by edibles (n = 428), and vaporizer pen/cartridge/liquid products (n = 290). CONCLUSION: The findings suggest CBD is represented as a medical option for numerous conditions and ailments. We recommend Health Canada to conduct a systematic audit of companies selling CBD for regulatory adherence

How Does the British Soft Drink Association Respond to Media Research Reporting on the Health Consequences of Sugary Drinks?

BackgroundSugar-sweetened beverages (SSBs) are the leading global source of added sugar intake and their consumption is associated with negative health outcomes, such as diabetes, cancers, cardiovascular diseases, and overall mortality. Despite consensus within the public health community about the need to reduce sugar intake, the non-alcoholic beverage industry engages in efforts to publicly undermine the evidence base surrounding the harmful effects of SSBs. There has been limited investigation of how SSB industry actors engage in public debates to challenge public health research and policy on SSBs. To address this gap, we thematically analyze the public comments and press releases of the British Soft Drinks Association (BSDA) since May 2014. ResultsA total of 175 news articles and 7 press releases were identified where the BSDA commented upon new SSB research in public settings. In these comments, four strategies were observed to undermine new research. First, the BSDA challenged study rigour and research design (n = 150). They challenged the policy implications of research by stating observational studies do not demonstrate causation, refuted data sources, questioned researcher motivations, and claimed research design did not account for confounding factors. Second, the BSDA positioned themselves as an altruistic public health partner (n = 52) intent on improving population-level nutrition citing their voluntary industry commitments. Third, the BSDA promoted concepts of safety that align with industry interests (n = 47). Lastly, the BSDA argued that the lifestyle of individual consumers should be the focus of public health interventions rather than the industry (n = 61). ConclusionThe findings illustrate the BSDA reliance on arguments of causation to discredit research and avoid policy interventions. Given the attention by the BSDA regarding the purported lack of evidence of causation between SSBs and non-communicable diseases, it is imperative that members of the public health community try to educate policy makers about (a) the complex nature of causation; (b) that evidence in favour of public health interventions cannot, and do not, solely rely on causation studies; and (c) that public health must sometimes abide by the precautionary principle in instituting interventions. &nbsp

What are the informational pathways that shape people's use of cannabidiol for medical purposes?

BACKGROUND: Cannabidiol (CBD) is commonly used to manage symptoms in conditions and diseases for which there is limited clinical research for its application. How consumers arrive and decide to use CBD for medical treatment, despite lacking clinical evidence, is largely unknown. In this paper, we seek to identify the informational pathways through which consumers arrive at CBD for medical purposes. METHODS: GoFundMe.com campaigns fundraising to purchase CBD between June 2017 and May 2019 were collected using the Crowdfunding for Health Research Portal (CHRP). Product descriptions were thematically analyzed to determine pathways leading to incorporation of CBD into medical treatment. Campaign characteristics such as fundraising ask, funding received, location, campaign title, description, Facebook shares, and number of donors were recorded. Specific medical uses of CBD proposed in campaigns were tabulated. RESULTS: The study identified 164 crowdfunding campaigns primarily from the USA (n=159), with several from Canada (n=5). The campaigns requested $2,219,284.24 (median,$7000) and raised $610,612.87 (median,$1805) from 6825 donors (median, 26). Many campaigns asked for other treatments or illness-related costs not specific to CBD. The campaigns were shared 42,299 times on Facebook (median, 156 shares). Three informational pathways were identified leading to incorporation of CBD into medical treatment, which were self-directed research (n=149), recommendations from a trusted care provider (n=36), and/or experiential insights shared by someone associated with or influencing the crowdfunders personal network (n=30). The proposed uses of CBD were for cancer (n=96), seizure-inducing diseases/conditions (n=48), other/unspecified (n=6), joint/inflammatory diseases (n=6), mental health disorders (n=3), nervous system diseases (n=3), and autoimmune diseases (n=2). CONCLUSIONS: Our results suggest that consumers crowdfunding come to CBD through internally motivated reasons versus exposure to advertisements or other forms of marketing. Campaign beneficiaries generally had an unmet medical need that other forms of treatment were not satisfying. Then, through one or more of the informational pathways identified, CBD is considered a potential solution

Advertising Alternative Cancer Treatments and Approaches on Meta Social Media Platforms: Content Analysis.

BACKGROUND: Alternative cancer treatment is associated with a greater risk of death than cancer patients undergoing conventional treatments. Anecdotal evidence suggests cancer patients view paid advertisements promoting alternative cancer treatment on social media, but the extent and nature of this advertising remain unknown. This context suggests an urgent need to investigate alternative cancer treatment advertising on social media. OBJECTIVE: This study aimed to systematically analyze the advertising activities of prominent alternative cancer treatment practitioners on Meta platforms, including Facebook, Instagram, Messenger, and Audience Network. We specifically sought to determine (1) whether paid advertising for alternative cancer treatment occurs on Meta social media platforms, (2) the strategies and messages of alternative cancer providers to reach and appeal to prospective patients, and (3) how the efficacy of alternative treatments is portrayed. METHODS: Between December 6, 2021, and December 12, 2021, we collected active advertisements from alternative cancer clinics using the Meta Ad Library. The information collected included identification number, URL, active/inactive status, dates launched/ran, advertiser page name, and a screenshot (image) or recording (video) of the advertisement. We then conducted a content analysis to determine how alternative cancer providers communicate the claimed benefits of their services and evaluated how they portrayed alternative cancer treatment efficacy. RESULTS: We identified 310 paid advertisements from 11 alternative cancer clinics on Meta (Facebook, Instagram, or Messenger) marketing alternative treatment approaches, care, and interventions. Alternative cancer providers appealed to prospective patients through eight strategies: (1) advertiser representation as a legitimate medical provider (n=289, 93.2%); (2) appealing to persons with limited treatments options (n=203, 65.5%); (3) client testimonials (n=168, 54.2%); (4) promoting holistic approaches (n=121, 39%); (5) promoting messages of care (n=81, 26.1%); (6) rhetoric related to science and research (n=72, 23.2%); (7) rhetoric pertaining to the latest technology (n=63, 20.3%); and (8) focusing treatment on cancer origins and cause (n=43, 13.9%). Overall, 25.8% (n=80) of advertisements included a direct statement claiming provider treatment can cure cancer or prolong life. CONCLUSIONS: Our results provide evidence alternative cancer providers are using Meta advertising products to market scientifically unsupported cancer treatments. Advertisements regularly referenced "alternative" and "natural" treatment approaches to cancer. Imagery and text content that emulated evidence-based medical providers created the impression that the offered treatments were effective medical options for cancer. Advertisements exploited the hope of patients with terminal and poor prognoses by sharing testimonials of past patients who allegedly were cured or had their lives prolonged. We recommend that Meta introduce a mandatory, human-led authorization process that is not reliant upon artificial intelligence for medical-related advertisers before giving advertising permissions. Further research should focus on the conflict of interest between social media platforms advertising products and public health