Dataset Information

Engaging a Community for Rare Genetic Disease: Best Practices and Education From Individual Crowdfunding Campaigns.

ABSTRACT: BACKGROUND:Genetic sequencing is critically important to diagnostic health care efforts in the United States today, yet it is still inaccessible to many. Meanwhile, the internet and social networking have made crowdfunding a realistic avenue for individuals and groups hoping to fund medical and research causes, including patients in need of whole exome genetic sequencing (WES). OBJECTIVE:Amplify Hope is an educational program designed to investigate what factors affect the success of medical crowdfunding campaigns. We conducted a needs assessment, a series of 25 interviews concerning crowdfunding, and provided training on best practices identified through our assessment for 11 individuals hoping to run their medical crowdfunding campaigns to raise money for patients to access trio WES to identify the mutated proteins that caused their apparent inherited disease. METHODS:The crowdfunding education was given in a 30-day training period with resources such as webinars, fact sheets and a crowdfunding training guide emailed to each participant. All campaigns were launched on the same date and were given 30 days to raise the same goal amount of US $5000. Reviewing the 4 crowdfunding campaigns that raised the goal amount within the 30-day period, we sought to identify features that made the 4 crowdfunding campaigns successful. In addition, we sought to assess which factors the resulting 75 donors report as influencing their decision to donate to a campaign. Finally, we investigated whether crowdfunding campaigns for exome sequencing had an impact on increasing applicant's and donors' knowledge of genomics. RESULTS:Of the 86 study inquiries, 11 participants submitted the required forms and launched their crowdfunding campaigns. A total of 4 of the 11 campaigns raised their goal amounts within 30 days. CONCLUSIONS:We found that social media played an important role in all campaigns. Specifically, a strong social media network, an active outreach process to networks, as well as engagement within the study all correlated with a higher success rate. Amplify Hope donors were more likely to support projects that were near their fundraising goals, and they found video far more effective for learning about genomics than any other medium.

SUBMITTER: Ortiz RA

PROVIDER: S-EPMC5818677 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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Engaging a Community for Rare Genetic Disease: Best Practices and Education From Individual Crowdfunding Campaigns.

Ortiz Romina Alicia RA Witte Steven S Gouw Arvin A Sanfilippo Ana A Tsai Richard R Fumagalli Danielle D Yu Christine C Lant Karla K Lipitz Nicole N Shepphird Jennifer J Alvina Fidelia B FB Cheng-Ho Lin Jimmy J

Interactive journal of medical research 20180205 1

<h4>Background</h4>Genetic sequencing is critically important to diagnostic health care efforts in the United States today, yet it is still inaccessible to many. Meanwhile, the internet and social networking have made crowdfunding a realistic avenue for individuals and groups hoping to fund medical and research causes, including patients in need of whole exome genetic sequencing (WES).<h4>Objective</h4>Amplify Hope is an educational program designed to investigate what factors affect the success ...[more]

PMID: 29402763

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Project description:BackgroundWeb-based crowdfunding has become a popular method to raise money for medical expenses, and there is growing research interest in this topic. However, crowdfunding data are largely composed of unstructured text, thereby posing many challenges for researchers hoping to answer questions about specific medical conditions. Previous studies have used methods that either failed to address major challenges or were poorly scalable to large sample sizes. To enable further research on this emerging funding mechanism in health care, better methods are needed.ObjectiveWe sought to validate an algorithm for identifying 11 disease categories in web-based medical crowdfunding campaigns. We hypothesized that a disease identification algorithm combining a named entity recognition (NER) model and word search approach could identify disease categories with high precision and accuracy. Such an algorithm would facilitate further research using these data.MethodsWeb scraping was used to collect data on medical crowdfunding campaigns from GoFundMe (GoFundMe Inc). Using pretrained NER and entity resolution models from Spark NLP for Healthcare in combination with targeted keyword searches, we constructed an algorithm to identify conditions in the campaign descriptions, translate conditions to International Classification of Diseases, 10th Revision, Clinical Modification (ICD-10-CM) codes, and predict the presence or absence of 11 disease categories in the campaigns. The classification performance of the algorithm was evaluated against 400 manually labeled campaigns.ResultsWe collected data on 89,645 crowdfunding campaigns through web scraping. The interrater reliability for detecting the presence of broad disease categories in the campaign descriptions was high (Cohen κ: range 0.69-0.96). The NER and entity resolution models identified 6594 unique (276,020 total) ICD-10-CM codes among all of the crowdfunding campaigns in our sample. Through our word search, we identified 3261 additional campaigns for which a medical condition was not otherwise detected with the NER model. When averaged across all disease categories and weighted by the number of campaigns that mentioned each disease category, the algorithm demonstrated an overall precision of 0.83 (range 0.48-0.97), a recall of 0.77 (range 0.42-0.98), an F1 score of 0.78 (range 0.56-0.96), and an accuracy of 95% (range 90%-98%).ConclusionsA disease identification algorithm combining pretrained natural language processing models and ICD-10-CM code-based disease categorization was able to detect 11 disease categories in medical crowdfunding campaigns with high precision and accuracy.

Project description:There has been growing recognition of the popularity of medical crowdfunding and research documenting how crowdfunding arises from, and contributes to, social and health inequities. While many researchers have surmised that racism could well play a role in medical crowdfunding campaign outcomes, research on these dynamics has been limited. No research to date has examined these dynamics among the most successful medical crowdfunding campaigns, focusing instead on average users' experiences or specific patient subpopulations. This paper analyzes key characteristics and demographics of the 827 most successful medical crowdfunding campaigns captured at a point in time in 2020 on the popular site GoFundMe, creating the first demographic archetype of "viral" or highly successful campaigns. We hypothesized that this sample would skew towards whiter, younger populations, more heavily represent men, and reflect critical illnesses and accidents affecting these populations, in addition to having visually appealing, well-crafted storytelling. Analysis supported these hypotheses, showing significant levels of racial and gender disparities among campaigners. While white men had the greatest representation, Black and Asian users, and black women in particular, were highly underrepresented. Like other studies, we find evidence that racial and gender disparities persist in terms of campaign outcomes as well. Alongside this quantitative analysis, a targeted discourse analysis revealed campaign narratives and comments reinforced racist and sexist tropes of selective deservingness. These findings add to growing calls for more health research into the ways that social media technologies shape health inequities for historically marginalized and disenfranchised populations. In particular, we underscore how successful crowdfunding campaigns, as a both a means of raising funds for health and a broader site of public engagement, may deepen and normalize gendered and racialized inequities. In this way, crowdfunding can be seen as a significant technological amplifier of the fundamental social causes of health disparities.

Project description:ObjectivesMedical crowdfunding is a rapidly growing practice where individuals leverage social networks to raise money for health-related needs. This practice has allowed many to access healthcare and avoid medical debt but has also raised a number of ethical concerns. A dominant criticism of this practice is that it is likely to increase inequities in access to healthcare if persons from relatively wealthy backgrounds, media connections, tech-savvy and educational attainments are best positioned to use and succeed with crowdfunding. However, limited data has been published to support this claim. Our objective in this paper is to assess this concern using socioeconomic data and information from crowdfunding campaigns.SettingTo assess this concern, we present an exploratory spatial analysis of a new dataset of crowdfunding campaigns for cancer-related care by Canadian residents.ParticipantsFour datasets were used: (1) a medical crowdfunding dataset that included cancer-related campaigns posted by Canadians, (2) 2016 Census Profile for aggregate dissemination areas, (3) aggregate dissemination area boundaries and (4) forward sortation area boundaries.ResultsOur exploratory spatial analysis demonstrates that use of crowdfunding for cancer-related needs in Canada corresponds with high income, home ownership and high educational attainment. Campaigns were also commonly located near city centres.ConclusionsThese findings support concerns that those in positions of relative socioeconomic privilege disproportionately use crowdfunding to address health-related needs. This study was not able to determine whether other socioeconomic dimensions such as race, gender, ethnicity, nationality and linguistic fluency are also correlated with use of medical crowdfunding. Thus, we call for further research to explore the relationship between socioeconomic variables and medical crowdfunding campaigning to explore these other socioeconomic variables and campaigns for needs unrelated to cancer.

Dataset Information

Engaging a Community for Rare Genetic Disease: Best Practices and Education From Individual Crowdfunding Campaigns.

Publications

Engaging a Community for Rare Genetic Disease: Best Practices and Education From Individual Crowdfunding Campaigns.

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