I waited to comment on this campaign until after it was over. I didn’t want it to color or cloud the novelty & I also wanted an honest evaluation of meeting the outlined expectations & goals. The TS Alliance works very hard on creating new & innovative ways to fund research. I will always appreciate & champion that. That said, I do think this is worthy of a larger discussion because certainly other organizations will see this & try & copy or put their own spin on it; which could raise some potential red flags. I’m not “picking on” the organization with these thoughts. I’m playing devil’s advocate because I know other organizations are certain to see this. They’ll also want to try to replicate it for themselves (like any new idea). They may already be doing that & I’m just not aware of it.
There were three research proposals offered up for crowdfunding consideration. Knowing the science & the organization as I do, this raises no concerns for me personally. However, I see caveats especially with larger organizations.
(I’m taking a birds-eye view for the public eye, but there are also organizational issues that come with nonprofit oversight that might make this a bit of challenge. I’d rather take the approach as the person within the organization lens than a professional view on this trend for a balanced discussion.)
If not properly vetted & peer-reviewed within the community by constituents & researchers equally, how do we know we are funding the best proposals? How do we know we are not throwing money at junk science?
I think other nonprofits who might be attracted to this model, including larger ones, have to bear this in mind first before they even begin to put a challenge like this together. That may mean additional time & resources that they may not have already in place to have these peer-reviewed by both their constituents & their researchers. Hopefully, other nonprofits will see it as a priority to be sure the proposals they back are solid & impactful science before initiating a challenge so it truly serves the purpose of furthering research.
Research is also competitive by nature. In certain diseases like cancer which have several large nonprofits, they have to be careful to actually put up proposals that serve their wider constituency instead of favoring specific diseases or a specific gender or population. This is already a hotly contested issue in setting research agendas for cancer as a whole within the government & other sectors.
Also while new researchers are essential to innovation & new thoughts & understanding; there is value also in the researchers who also serve as clinicians and on the pulse of what people who suffer these illnesses really need. How do we guarantee though that we are courting new researchers that will stick around, & that their research will be shared with the community if funded? Can we provide balance by also putting up at least 1 trusted proposal from a veteran researcher within the community while we attract new ones into the fold? I do worry that some researchers might see an opportunity to do a one & done project like this, but then keep the results to themselves or somehow cut out the community that funded them in order to achieve their own directives? I’m not sure a nonprofit can guard against that to be honest, but they should try. Those results need to be shared & disseminated back to the community as well.
This also takes oversight & overhead that certain organizations may not see as a priority or would rather not invest in, but it is a concern to further inroads & understanding.
The other issue here is setting minimum dollars for votes. The amount set whether it be $50 or $100 means different things to different people from differing walks of life. If someone is disabled, older, or on a limited income, but has already paid dues or given to research in some capacity shouldn’t they be allowed to vote period? Should a struggling family with 2 or more children with greater health needs & a particular disease who gives what they can, but may only be able to afford half the minimum be excluded from participating because they can’t make the minimum dollar amount? I know this varies organization to organization too, but I would like to see a few different levels set up for the voting structure to make a more diverse population feel more comfortable participating.
Yet, on the other hand, from a fundraising perspective, I understand the minimum to arrive at a specific goal more easily & equitably as well. So I see both sides. But it can’t be cost prohibitive amongst larger or smaller nonprofits so it excludes participation from the people who are supposed to benefit from such a challenge in the first place.
The last issue this challenge opens up is first is funding quality research proposals, but what’s next? Devices? Clinical Drug trials? How will these be vetted & overseen? How do we know that pharmaceuticals & devices are disclosing what they should when offering up a challenge?
I can also see issues surrounding informed consent, review approval, & then also FDA implications. But this is a natural springboard & progression common in the research community, so this possibility of developing these types of future challenges cannot be ignored but do need contingency plans.
In fact, there are plenty of devices on Kickstarter & Indiegogo already but they clearly state out front whether they are FDA approved or not. So the consumer who is investing assumes their own risk in funding & participating. Yet it’s a different ballgame when it comes from a nonprofit entity partnering with manufacturers with their own agendas & regulations. Broken trust or cutting corners can cause a real impact on trust that goes beyond any particular challenge or drive for dollars.
Not to say it shouldn’t happen….but we can’t be naive to it either.
On the plus side: This also may be a good way for organizations to raise additional funding for research that might not get funded due to budget constraints or lack of funding opportunities or resources. Or to augment or bolster research efforts in the face of potential cuts from the government or other entities.
Overall, I will say I applaud the TS Alliance for taking such a healthy risk with this campaign.
For a first shot, it raised a good amount of money even though the dollar goal was not met. It also offered some solid science for consideration.
I commend them because I know the people behind this put a lot of thought, time, & investment into properly vetting & offering up this challenge from its creation. It was launched as a unique experiment to fund research that might not have had the opportunity to be funded otherwise, which is always a win-win for those of us they serve.