Is it possible to crowdfund a clinical trial? Within 90 days we are going to collect 7 million NOK for a specific study on 140 ME/CFS patients at Haukeland Hospital in Bergen, Norway. Are we the first in the world to crowdfund a clinical trial?
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Crowdfunding of medical research is something that right now seems to be gaining momentum internationally. In tough economic times like now, there are cuts in research budgets in many parts of the world, so the question many are asking is: Are there other ways to fund the research?
Crowdfunding is an effort made over the Internet, where individuals can pool their money. There is a crowd funding something together. In crowdfunding, it’s about money and it’s about many coming together to donate to something they all want to get done, regardless of their own financial constraints.
So far crowdfunding has mostly been focused on collecting money from fans for creative projects such as books and music releases. Indiegogo.com advertises that you can Fund yourself. In Norway NewJelly.com is for creative projects and FundedByMe.com has a Nordic profile. GlobalGiving.org focuses on environmental projects or projects in the developing world.
Today we see projects emerging to crowdfund medical devices and applications, through the newly established Medstartr.com. Things are also starting to happen in the medical research community.
Health Money over boundries that no longer exist
Health budgets are shrinking. Online large networks are formed across borders, that no longer exist. There are the international fan clubs and health forums where people are discussing health problems, often their own, and often diagnosis and treatment.
We talk about Health 2.0, where patients use technology and networks to gather the information when and where they want it through internet sources. They engage in their own health process.
Will the patients, their relatives and their friends be those who in the future ensure that medical research is broad enough? Will they be able to fund the research they want to happen? Yes, it looks that way. Recently CureLauncher was launched, and their goal is to crowdfund clinical studies, i.e. research into new treatments, often in an attempt to find potential new drugs. It’s still early for CureLauncher, so they do not yet have great projects to showcase.
Will Norway be the first place in the world to crowdfund research? Until now, as far as I know, no one has succeeded in crowdfunding such a clinical trial through a patient initiative. Through MEandYou we are now trying to be the first in the world.
Important research lacks funding
In 2012, a study from Haukeland Hospital on the use of the immunosuppressive medication Rituximab against ME caused a sensation. Two thirds of the patients in the study experienced significant improvement after being treated with the drug. However, with only 30 patients, the study is too small to draw definitive conclusions. If the findings turn out to be right, this might be the the most significant breakthrough in the research history of ME. The researchers at Haukeland applied for the support of a larger study of 140 patients through the Research Council of Norway (RCN). In December 2012, the RCN stated that the scientific quality of the application was worthy of support, but failed to allocate funds for this study in favour of other projects.
Patients reacted with despair and frustration over the outlook of having to wait even longer. I thought, could there be other ways to find the necessary funding?
Three months for MEanYou
I’ve now used three months to develope the tools that make it possible for us to raise the 7 million NOK we need to get the study started. Now it is up to those who want to help by using them. Nine days after the launch of MEandYou, we passed a half million NOK. There are contributions from members from both home and abroad. The minimum amount is 20 NOK, the largest is 100 000. Many hundreds have donated money.
The Internet and social media provides hands
The Internet makes this possible for us. We can easily establish contact with large networks that are interested in the same as us. A few keystrokes and you have donated through PayPal. There are now applications FundRazr.com https://fundrazr.com/ where fund raisers and crowdfunders can raise funds directly through Facebook.
We want to show that crowdfunding can also be an opportunity for medical research. There is also an important question that needs to be considered: Is this the way we want it to be? Maybe. Maybe not. On the one hand private initiative and commitment is good, and we know that not everything can be top priority at the same time. On the other hand: Is the patients themselves, with their desperate desire to be healthy and able to work again, that shoud be the ones funding research that otherwise isn’t a research priority?
Is MEandYou a rich uncle?
The answer is no. MEandYou enters the picture when when the study protocol has already been designed. MEandYou cannot affect how the research will take place and what results the researchers to find. But we support and help fund a well-founded project that is already rated as highly professional from outsiders, and already partially funded by Government funds. MEandYou is not pushing something that would not otherwise be done, or change internal structures. However, this study lacks thus means to finish. Indefinitely.
Crowdfunding – a democratic contribution?
Anyway, crowdfunding, including that of clinical trials, is probably something we’re going to see more of in the future. By then should we be discussing how the potential of a bottom-up commitment can be put to the best possible use.
In a democratic society it is important that people are able to influence and to put society’s challenges on the agenda, and that the public is supplemented by a broad grass roots involvement in this area. MEandYou will contribute to the community and into research. Those who are part of MEandYou have decided to go beyond the usual channels and raise the money that is required. I have invited people to join. They have said yes. It can never be wrong to seek more knowledge. But who will pay for its growth? Right now, right here, it is MEandYou.
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On Friday, 10 days after launching, we reached our first milestone of half a million NOK in the collection account.