Crowdfunding for complementary and alternative medicine: What are cancer patients seeking?

Jeremy Snyder; Marco Zenone; Timothy Caulfield

doi:10.1371/journal.pone.0242048

Peer Review History

Original SubmissionApril 17, 2020
9 Oct 2020 Decision Letter - Quinn Grundy, Editor PONE-D-20-09717 Crowdfunding for Complementary and Alternative Medicine: What are Cancer Patients Seeking? PLOS ONE Dear Dr. Snyder, Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process. The reviewers were highly positive about the focus and conduct of the study. In responding to their comments, I encourage you specifically to attend to: - the abstract and discussion foreground findings related to gender, socio-economic status, and educational attainment, but these are present in your results only implicitly; consider presenting analyses involving demographic data on the recipients of crowdfunding campaigns more explicitly or editing the discussion to be consistent with the findings of this study - consider how you might add qualitative dimensions to the results; given that campaigns are publicly available on the internet, it may not be appropriate to provide direct quotations (which are then identifying), but perhaps illustrative examples or composite sketches could give readers a richer picture of the campaigns you describe - consider re-organizing the results section so that there is little duplication between the text and the tables Please submit your revised manuscript by Nov 15 2020 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file. Please include the following items when submitting your revised manuscript: A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'. A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'. An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'. 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The following resources for replacing copyrighted map figures may be helpful: USGS National Map Viewer (public domain): http://viewer.nationalmap.gov/viewer/ The Gateway to Astronaut Photography of Earth (public domain): http://eol.jsc.nasa.gov/sseop/clickmap/ Maps at the CIA (public domain): https://www.cia.gov/library/publications/the-world-factbook/index.html and https://www.cia.gov/library/publications/cia-maps-publications/index.html NASA Earth Observatory (public domain): http://earthobservatory.nasa.gov/ Landsat: http://landsat.visibleearth.nasa.gov/ USGS EROS (Earth Resources Observatory and Science (EROS) Center) (public domain): http://eros.usgs.gov/# Natural Earth (public domain): http://www.naturalearthdata.com/ [Note: HTML markup is below. Please do not edit.] Reviewers' comments: Reviewer's Responses to Questions Comments to the Author 1. Is the manuscript technically sound, and do the data support the conclusions? The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #1: Yes Reviewer #2: Yes ******** 2. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: Yes Reviewer #2: Yes ****** 3. Have the authors made all data underlying the findings in their manuscript fully available? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #1: Yes Reviewer #2: Yes ****** 4. Is the manuscript presented in an intelligible fashion and written in standard English? PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #1: Yes Reviewer #2: Yes ****** 5. Review Comments to the Author Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #1: Well designed and executed study delineating ongoing trends on CAM cancer fundraising activities on GoFundMe. Despite strong media coverage of the subject and GoFundMe's awareness of the problem (including banning one alternative cancer clinic in March 2019), GoFundMe remains a hotbed of economic activity surrounding dubious healthcare. We should have strong concern that people with advanced cancers and their caregivers are being taken advantage of. As the authors note the interest surrounding many of these therapies warrants greater investigation for each. Patients and families are spending time and energy and investing hope into each of these purported treatments. The medical community needs to do more than respond with dismay. There is a rich amount of information here about trends of fundraising activity. I would be interested in the fundraising totals allocated as well but understand the study is meant to focus on expressed interests of patients/caregivers not the success of the campaigns. Reviewer #2: This is an interesting and important piece about a specific type of healthcare (CAM) and its prevalence on GoFundMe. My first reaction was “no literature review?” but I ended up kind of liking the “let’s get to it” style of the paper, which I think is common on PONE. It is well-written, based on solid research, and offers important commentary at the intersection of crowdfunding, cancer, and healthcare. I would recommend that this piece be accepted, with some revisions. My few suggestions below are meant to improve what is already a strong paper. • It would be helpful to have a bit more information on who is pursuing CAM and by extension, who is not. At least a breakdown of gender of subjects? I am surprised the authors did not code for visible minority status when they were looking through pages. Why not? I’d at least explain. • A few questions on methods: Why June 4 to June 4? It feels arbitrary? Are there any intercoder reliability statistics on the coding of inclusion/exclusion? Some more clarity on the geographic parameters of the data (or lack thereof) would be helpful—was it just a case of winnowing the global set of cases? It is not clear as written. • Pages 8 and 9 were a slog—I’d rely solely on tables with language after each one—this was impossible to work through. • I did wonder at the lack of texture and depth in the data—why not use some of the qualitative data (text, image description) to bolster and enhance the arguments? Why not let some of these subjects speak for themselves? I’m not suggesting a massive infusion of qualitative data, but it would be a stronger paper if the subject voices could be heard. • The data on gender, education, and income are not featured as strongly as one might expect, given their featuring in the abstract. I’d add a bit more to this discussion. • There is some analytical slippage on page 10 when the authors talk of a “gendered dimension”—the numbers are not evidence of CAM usage, with gender variation. They are evidence of variation in asking for money for CAM treatments. It may be the case that men are not asking as much as women, but this is a different point. • Finally, I would encourage the authors to move beyond “perhaps we should close some of these bad clinics” thinking to consider the bigger picture. Maybe they are providing more evidence that the whole enterprise stinks? There is already plenty of data showing that crowdfunding is inequitable. Wouldn’t it be better to have all this regulated and funded by the state? A discussion of this point would make the paper more wide-reaching in scope In sum, it’s a very nice paper and I applaud the authors for their efforts. Looking forward to seeing it in print! ****** 6. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy. Reviewer #1: Yes:** Ford Vox, MD Reviewer #2: No [NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.] While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step. https://doi.org/10.1371/journal.pone.0242048.r001
Revision 1
19 Oct 2020 Author Response Thank you for the opportunity to revise our manuscript and to the reviewers and editor for their very helpful comments and suggestions. All comments are reproduced below in full and responses follow each ccomment. - the abstract and discussion foreground findings related to gender, socio-economic status, and educational attainment, but these are present in your results only implicitly; consider presenting analyses involving demographic data on the recipients of crowdfunding campaigns more explicitly or editing the discussion to be consistent with the findings of this study We have edited the abstract to be more in line with the discussion. - consider how you might add qualitative dimensions to the results; given that campaigns are publicly available on the internet, it may not be appropriate to provide direct quotations (which are then identifying), but perhaps illustrative examples or composite sketches could give readers a richer picture of the campaigns you describe We have now added characteristic quotations from the campaigns throughout the results section as per reviewer two’s suggestion. - consider re-organizing the results section so that there is little duplication between the text and the tables We now use quotes from the campaigns to better characterize the quantitative data that is presented in the results and tables. Table 8 appears to be the appendix you reference in the Methods section - please re-label or cite Table 8 in the text. We have re-labeled this table as Appendix 2. Thank you for stating the following in the Acknowledgments Section of your manuscript: "The research was supported by a grant from the Greenwall Foundation. Patients or the public were not involved in the design, or conduct, or reporting, or dissemination plans of our research." We note that you have provided funding information that is not currently declared in your Funding Statement. However, funding information should not appear in the Acknowledgments section or other areas of your manuscript. We will only publish funding information present in the Funding Statement section of the online submission form. Please remove any funding-related text from the manuscript and let us know how you would like to update your Funding Statement. Currently, your Funding Statement reads as follows: "The authors received no specific funding for this work." Please include your amended statements within your cover letter; we will change the online submission form on your behalf. We would like to amend the funding statement to indicate that “The authors received funding from the Greenwall Foundation that supported this work.” 3. We note that you have stated that you will provide repository information for your data at acceptance. Should your manuscript be accepted for publication, we will hold it until you provide the relevant accession numbers or DOIs necessary to access your data. If you wish to make changes to your Data Availability statement, please describe these changes in your cover letter and we will update your Data Availability statement to reflect the information you provide. Data is available at this link: https://researchdata.sfu.ca/pydio_public/b8bc37 4. Please ensure that you refer to Figures 1-5 in your text as, if accepted, production will need this reference to link the reader to the figures. All figures are now referred to in the text. 5. We note that Figures 1-5 in your submission contain map images which may be copyrighted. All PLOS content is published under the Creative Commons Attribution License (CC BY 4.0), which means that the manuscript, images, and Supporting Information files will be freely available online, and any third party is permitted to access, download, copy, distribute, and use these materials in any way, even commercially, with proper attribution. For these reasons, we cannot publish previously copyrighted maps or satellite images created using proprietary data, such as Google software (Google Maps, Street View, and Earth). For more information, see our copyright guidelines: http://journals.plos.org/plosone/s/licenses-and-copyright. We now use figures drawn from Arcgis: https://doc.arcgis.com/en/arcgis-online/reference/access-use-constraints.htm Reviewer #1: Well designed and executed study delineating ongoing trends on CAM cancer fundraising activities on GoFundMe. Despite strong media coverage of the subject and GoFundMe's awareness of the problem (including banning one alternative cancer clinic in March 2019), GoFundMe remains a hotbed of economic activity surrounding dubious healthcare. We should have strong concern that people with advanced cancers and their caregivers are being taken advantage of. As the authors note the interest surrounding many of these therapies warrants greater investigation for each. Patients and families are spending time and energy and investing hope into each of these purported treatments. The medical community needs to do more than respond with dismay. There is a rich amount of information here about trends of fundraising activity. I would be interested in the fundraising totals allocated as well but understand the study is meant to focus on expressed interests of patients/caregivers not the success of the campaigns. We agree that this information is of interest and so have added the total and median funding requests and pledges to the first paragraph of the findings section, namely: “They requested $39,611,973.20 (median $19,880) and were pledged $12,756,563.92 (median $5,055.50) or 32.2% of that amount”. Reviewer #2: This is an interesting and important piece about a specific type of healthcare (CAM) and its prevalence on GoFundMe. My first reaction was “no literature review?” but I ended up kind of liking the “let’s get to it” style of the paper, which I think is common on PONE. It is well-written, based on solid research, and offers important commentary at the intersection of crowdfunding, cancer, and healthcare. I would recommend that this piece be accepted, with some revisions. My few suggestions below are meant to improve what is already a strong paper. • It would be helpful to have a bit more information on who is pursuing CAM and by extension, who is not. At least a breakdown of gender of subjects? I am surprised the authors did not code for visible minority status when they were looking through pages. Why not? I’d at least explain. We agree that this would be valuable context to add to the study. We did not do so in this case because we aimed for a big picture sense of the market for CAM cancer treatments and because the database we used does not capture images – only campaign text. This is now clarified in the methods section. We think that it would be worthwhile to take a smaller dataset of campaigns for CAM cancer treatment and assess gender and visible minority status. We aim to do so in the future. • A few questions on methods: Why June 4 to June 4? It feels arbitrary? Are there any intercoder reliability statistics on the coding of inclusion/exclusion? Some more clarity on the geographic parameters of the data (or lack thereof) would be helpful—was it just a case of winnowing the global set of cases? It is not clear as written. June 4 was the start date for our search process and that time range was selected to capture a sample of campaigns created over the most recent one-year period. There were no geographic limits placed on the sample, only the temporal limit. The third author reviewed 5% of campaign codes as they were added by the first and second authors and the team discussed and resolved divergences in coding as they arose. We did not gather intercoder reliability statistics. • Pages 8 and 9 were a slog—I’d rely solely on tables with language after each one—this was impossible to work through. We have added qualitative data to the results section that breaks up the presentation of the quantitative data and improves the readability of this section. • I did wonder at the lack of texture and depth in the data—why not use some of the qualitative data (text, image description) to bolster and enhance the arguments? Why not let some of these subjects speak for themselves? I’m not suggesting a massive infusion of qualitative data, but it would be a stronger paper if the subject voices could be heard. Thank you for this suggestion. We have now added quotes from the campaigns that gives characteristic language from the campaigners. • The data on gender, education, and income are not featured as strongly as one might expect, given their featuring in the abstract. I’d add a bit more to this discussion. We have modified the abstract to be more consistent with the discussion. • There is some analytical slippage on page 10 when the authors talk of a “gendered dimension”—the numbers are not evidence of CAM usage, with gender variation. They are evidence of variation in asking for money for CAM treatments. It may be the case that men are not asking as much as women, but this is a different point. We now are more precise with this claim, specifically that it supports greater fundraising interest by women for CAM cancer interventions. • Finally, I would encourage the authors to move beyond “perhaps we should close some of these bad clinics” thinking to consider the bigger picture. Maybe they are providing more evidence that the whole enterprise stinks? There is already plenty of data showing that crowdfunding is inequitable. Wouldn’t it be better to have all this regulated and funded by the state? A discussion of this point would make the paper more wide-reaching in scope. Thank you for raising this point. While we agree that crowdfunding is on the whole deeply problematic and inequitable, we think it is important to distinguish between particularly problematic practices such as crowdfunding for unproven and potentially dangerous or worthless medical interventions and crowdfunding for, say, a Black Lives Matter group or wait staff put out of work by the COVID-19 pandemic. We agree that states should regulate CAM treatments but, as these campaigns show, the global nature of the marketplace makes this difficult. If the US or Canada have stricter regulations, campaigners may seek funding to go to Tijuana, which our findings show is now happening. We have added to the discussion to make this point clear. We do not think that states should be funding CAM cancer treatments unless there is clear evidence of efficacy and safety. https://doi.org/10.1371/journal.pone.0242048.r002
27 Oct 2020 Decision Letter - Quinn Grundy, Editor Crowdfunding for Complementary and Alternative Medicine: What are Cancer Patients Seeking? PONE-D-20-09717R1 Dear Dr. Snyder, We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements. Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication. An invoice for payment will follow shortly after the formal acceptance. To ensure an efficient process, please log into Editorial Manager at http://www.editorialmanager.com/pone/, click the 'Update My Information' link at the top of the page, and double check that your user information is up-to-date. If you have any billing related questions, please contact our Author Billing department directly at authorbilling@plos.org. If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org. Kind regards, Quinn Grundy, PhD, RN Academic Editor PLOS ONE Additional Editor Comments (optional): Reviewers' comments: https://doi.org/10.1371/journal.pone.0242048.r003
Formally Accepted
10 Nov 2020 Acceptance Letter - Quinn Grundy, Editor PONE-D-20-09717R1 Crowdfunding for Complementary and Alternative Medicine: What are Cancer Patients Seeking? Dear Dr. Snyder: I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department. If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org. If we can help with anything else, please email us at plosone@plos.org. Thank you for submitting your work to PLOS ONE and supporting open access. Kind regards, PLOS ONE Editorial Office Staff on behalf of Dr. Quinn Grundy Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0242048.r004

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