What we’re doing -- and why.
For the “Why”, we start with some premises:
We believe everyone involved in medical research has the same goal – to treat better, and try to cure, dreaded diseases.
For these researchers, and especially those focused on rarer or extreme cases, there is no likelihood that all the world’s best researchers are all situated in the same institution, or that all or even most of the patients are all located in one area, or that the most modern resources needed to explore the most effective therapies and a cure for that disease are solely in one place.
Researchers, cases and patients, resources, expertise, knowledge, creative thinking, bold approaches, etc. are spread out among many institutions and locations across the globe. As a result, not all clinicians or researchers are pursuing the most auspicious therapies. In fact, and for some of the reasons noted below, many may not even know of recent discoveries, or what others are in the process of pursuing that’s looking promising.
And there are disincentives that encourage the wrong behavior in medical research.
For example:
· Academic or institutional credits, awards and research grants are allocated to specific lead principal investigators and labs, thereby emphasizing individual -- and discouraging collective -- action and expertise;
· Initiatives are funded with narrow objectives precluding the benefits of spill-over effects to other avenues of research;
· Clinical trials are frequently delayed or terminated due to difficulties in patient recruitment across, and sometimes even within, institutions, due to lack of shared information, limitations on sharing biological samples and other factors when, had institutions cooperated, there would have been a surplus of willing patients;
· Limitations imposed by journals discourage both timeliness and transparency, with promising and needed information withheld to comply with publishing requirements; moreover, there is a reluctance to publicize failures, thereby precluding others from learning from them; and,
· Of course, certain financial arrangements and IP constraints create significant disincentives to cooperate.
So, we asked:
What if researchers and institutions with complementary resources could communicate effectively, in a cooperative manner and with innovative incentives that rewarded, not discouraged, collaborative action?
The result would be the equivalent of a massive, collaborative research effort, one that is already funded and resourced with some of the best minds on the planet, that would eschew overlap and redundancy, that would allow progress against horrible afflictions to accelerate, all while diversifying and significantly de-risking research initiatives.
How could anyone not want to do that, when so many lives are at stake?
We initially focused on a specific rare cancer, appendiceal, to have a proof point for what we were proposing and because the seed for our efforts germinated from an MIT Workshop on that rare disease. But, everything we are now doing is intended to be applicable to all medical research, regardless of the disease.
Specifically, we are:
Creating infrastructure for better and more communication. The intent is to keep all those interested in a field abreast of new developments, what each other’s research is focused on, why that approach was chosen, what issues are being encountered or resources are needed, and what any current results show.
The point is to encourage increasingly open and transparent communication, and obtain the benefits of other’s knowledge and expertise.
Fostering cooperation by leveraging the more open communications to have researchers and institutions consider various ways they can each assist one another. That might be as simple as detecting resources that one institution has that another needs – for example, patients for a trial or tissue for review at a large institution with many patients, while another institution has researchers with a novel approach and the lab to support it, but lacking the clinical reach to trial it. Another example is working with others to create robust data sets of relevant patient information to buttress the cooperative efforts and spur new insights from data mining and AI.
The point is to begin to put together an expanding and accelerating set of possible therapies that would not be tried at all due to, for example, the mismatch between patients and researchers at any particular institution or the lack of sufficiently robust information to have teased out the approach.
Creating collaborations among researchers and institutions, pharma and biotech companies, patient advocacy groups, financiers, regulators and others.
The point is to diversify and de-risk, with cooperative efforts that can eliminate or at least mitigate the existing disincentives and that can create new forms of incentives and initiatives all with the purpose and intent to eliminate disease.