A recent article raises the possibility that “Crowdfunding Is Evil: At Least When It Comes to the Public Good.” Writing in Wired magazine, Peter Moskowitz focuses primarily on the work of Daren Brabham of the Annenberg School for Communication and Journalism at USC. Moskowitz begins with the example of teachers who have to resort to crowdfunding to pay for basic school supplies, something that is increasingly necessary as school districts cut back funding. But such efforts can end up making things worse, since the school district sees that the teachers are taking care of their own funding needs, and assume they’re managing just fine without district support!

For myeloma research, the same can be true. Right now, the broad goal of the myeloma community is to increase NIH, NCI and other government funding for myeloma research, and bring young investigators with important new ideas into the field. Specific areas of research must be peer-reviewed by leaders in the field and deemed a priority. Any implication that researchers are “managing just fine” on their own could threaten future government funding.

As the article in Wired notes, the downside of crowdfunding is that it can provide an excuse to leave more and more basic needs up to the crowd! As Rodrigo Davies, the product manager at Neighborly, where people can put up money for municipal bonds, says in the Wired article, “It’s a bit… [like] opening Pandora’s box.”

Now, let’s not diminish some areas where crowdfunding has been and can continue to be what the article calls “awesome”—such as in the development of a 3D printer for home use or a Robocop statue in Detroit. But these are not public necessities. The central problem with myeloma patients raising money for research is that they are being asked to contribute without knowing if what is being proposed is really most necessary or effective.

Through the IMF, patients do contribute to the funding of research grants. But their donations go toward future peer-reviewed research programs. This is very different from asking patients to select and contribute to a pet project.

In the academic or university research setting, notes Brabham, professors are now encouraged to crowdfund for their research expenses before they can qualify for a matching grant. This means that “sexy or flashy” proposals end up getting priority—not the best criteria for funding myeloma clinical trials!

For those interested in more details, Daren Brabham has written two books – Crowdsourcing in the Public Sector and Crowdsourcing, and many articles on the subject as well:  “Crowdsourcing Applications for Public Health,” “Crowdsourcing as a Model for Problem Solving: An Introduction and Cases,” and “Crowdsourcing the Public Participation Process for Planning Projects.” He also has a blog called (no surprise here) “Crowdsourcing.”

So as I have mentioned in a previous blog, be wary and aware! The negative consequences of crowdfunding can be serious.

Stay tuned as always for future news!

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

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