Some of my thoughts revolving around FasterCures' Consortia-pedia project
Why are you so
passionate in finding ways to accelerate research for cerebral palsy?
The best way to answer would be to introduce you to my
thirteen-year-old daughter who was diagnosed with CP about a year after she was
born. Everything flows from my personal desires to help her, and then from my more
professional interests in management. Ultimately, I'm passionate about
accelerating “good work” of all kinds by groups operating in and around the CP
sphere.
You created the Consortia-pedia mind map, a
great way for visualizing how to develop and manage biomedical research
consortia in an interactive way. What impelled you to do it?
Well phrased. A mind map
is a visual thinking tool – cloud-based, in this case – that I routinely use to help (me) make sense of complicated stuff. Consortia-pedia is laden with great info. I
thought a map might help to engage and expedite other peoples’ understanding of
it, and maybe even motivate them to use it.
Why are you
interested in research-by-consortia?
I'm trying, generally, to bring
the best of the best management thinking to CP-facing organizations. I
recognize research-by-consortia as a promising way for people to come together
to address shared problems and/ or enable innovation. I’m interested in how to
do those things well.
What challenges in cerebral palsy
research do you think could be best addressed by a consortium-based
collaboration?
There are currently formal and informal cross-sector
networks dealing with CP in its many aspects. NeuroDevNet, a Canadian network dedicated
to neurodevelopmental research, is one example. To my knowledge, though, none actually
calls itself a consortium.
There are also standalone nonprofits with their own sets
of priorities, most notably Cerebral Palsy International Research Foundation, CPIRF,
which funds cutting edge research. Its priorities touch on at least three of
the four consortia “objectives” your work uncovered: basic science, products,
and biomarkers (to identify babies at risk, for example).
What's your relationship
to those groups and other CP organizations?
I’m a parent living under
a CP umbrella. I’m also in the challenging position of being an outsider
relative to those groups. So, going back to CPIRF, for example, I’m 100% on
board with its research agenda but I’m equally in the dark as to how it’s being
managed.
I want the leaders of all of our organizations to use the best
available tools and resources. Consortia-pedia is a great resource for people
involved in starting or running complex collaborations. I doubt, however, that
our leaders know about it. If my map could somehow play a part in drawing their
attention to it, I’d be a happier camper.
From your perspective, what can
biomedical researchers do better?
To arrive at faster cures across
the board, we need to do both more and better work. It follows that I'd like
for leaders to be open to better ways of maximizing the overall effectiveness
of their organizations in carrying out their missions.
Consortia-pedia offers
management advice from a strong translational science perspective. There are other
folks coming at (the subject of) “collaborating better” from business
management and organizational science perspectives who also have valuable
things to say. They’re getting to where they’re now able to offer shortcuts and
tools that any consortia leader could readily apply -- and so should pay
attention to.
That's an example of a way organizations can “open themselves up”
to the whole big rest of the world for help.
Do you have another
example in mind?
I do.
I'm high on the idea of making much greater use
of the experience, creativity, and talents of the many (tens of millions, in
the case of childhood neurological disorders and conditions) patients and
family members who have personal stakes in our organizations, consortia
included. Who knows how many of us might be willing and able to work to advance
our favorite missions, and to do so for little or no compensation?
It's becoming
easier and easier to connect with parents like me in meaningful ways. As I hope
my map shows, we can be more than just potential donors and/or passive
recipients of one-way messages.
