Crowdsourced clinical studies have been the subject of previous posts by this author. The Wiki definition of crowdfunding is: “the collective effort of individuals who network and pool their money, usually via the Internet, to support efforts initiated by other people or organizations.” I have recently become aware of non-profit organizations which are focused on crowdfunding for medical research. One of these is Consano. As described by the non-profit, an ideal project for crowdfunding would: (a) be easily explained/understood by the lay public, (b) create an emotional response in a potential donor (this can be achieved through video or words), (c) has a realistic funding goal (and the project would happen even if the full funding goal on Consano is not met), and (d) is being submitted by a motivated researcher who will reach out to their personal network to kickstart the funding. Current projects range from targeted therapies for uterine cancer to increasing available lungs for transplant. Another, at the University of Michigan has recently won an award from the non-profit Patient Centered Outcomes Research Institute (PCORI) for Wellspringboard, its medical research crowdfunding platform. I will discuss five reasons why I believe crowdfunding for medical research is both innovative and beneficial.
1. There are significant problems with both public and industry funding. According to the Federation of American Societies for Experimental Biology, the number of research project grants from the NIH has decreased every year since 2004. In addition, the onerous and long process of research grant application has spawned an industry of its own. On the ‘other side’, almost 75% of clinical research trials in medicine is funded by private companies (Bodenheimer, T. 2000. Uneasy alliance: Clinical investigators and the pharmaceutical industry. New England Journal of Medicine 342:1539-1544). Critics of private (industry-sponsored) point to inherent conflicts of interest including investigator/investors and the practice of not publishing negative results. One innovative approach to funding is being applied by the Adelson Medical Research Foundation which “recruits and funds groups of top university researchers who agree to work as collaborators in solving two major medical problems: cancer and neural repair (which would benefit stroke and spinal cord injury victims).” Crowdfunding, on the other hand, allows for individual investigators to obtain funding without restricting the project’s objective as determined by the investigator.
2. The established system discourages new young researchers. There are many roadblocks to funding. As eloquently discussed in a paper by brokenpipeline.org “Many early career scientists are trapped in a research “Catch 22”. They can’t get the NIH R01 funding they need to establish a lab and launch an independent career because NIH reviewers say they don’t have the data to support their grant applications. Yet the preliminary data and proof that experiments will succeed is hard to come by without that very funding.” Therefore, more innovative ways to obtain funding are needed by this important sector of scientists. The lack of funding not only demoralizes young scientists of today, but discourages those in the future from pursuing careers in research.
3. Medical research funding need not be a zero sum game. Prioritization of the focus of research is a necessity of traditional funding sources and is seen as a dilemma in many countries. This is especially true of publicly funded projects. As is well-stated in the above referenced editorial in the journal Nature, “What is clear is that when it comes to funding science, governments are not interested in providing a pool of money simply for the purposes of satisfying researchers’ curiosity. Rather, they like to think in broad strategic terms — which research areas are most likely to lead to future advances in technology and wider societal benefits.” Crowdfunding can accommodate a multitude of research projects which are not financially mutually exclusive.
4. The researcher continues to be involved in the fundraising campaign. The personal involvement of the researcher in the fundraising process (at Consano) accomplishes a few things. Outreach to networks of people and the media help maintain interest in the project. It also gives information and hope to patients and their loved ones interested in the topic.
5. It is a way to provide updates of the research itself. Traditional research studies do not reveal results until after the completion of the trial and on average publication is after 4-5 years for a positive result trial and 6-8 years for a neutral or negative trial. While a crowdfunded trial may not release the results until after the trial, the Consano-funded investigator gives quarterly updates on how the trial is going. This maintains donor interest and inspires others to give.
It should be noted that projects approved by Consano all require IRB (institutional review board, the patient advocate human subject review board) and must go through an investigator and project vetting process.
These crowdfunding organizations join pioneering health innovation accelerators Medstartr and Healthfundr in spanning the crowdfunding healthcare ecosystem. It is great to see grass roots business models of medical research funding, generally thought of as ivory tower with high level financing and philanthropy. I also see this as a way to bridge the physician-patient relationship divide which has increased significantly over the past two decades.
For further information one might want to view an interview with Consano CEO Molly Lindquist. The author has no financial or other relationship with any companies or organizations mentioned.