Interviewed By FasterCures

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.

ROUND FOUR: What CP Parents Are For (Part D.3)

How may orgs inside the CP sphere fully realize the potential of collaborative communities?

LOCAL KNOWLEDGE 

For those in the earliest, exploratory, stages of this relatively deeper form of constituent or customer engagement, it might help to think "grassroots." Think in terms of what you can do to expand parents' and families' opportunities to creatively address their own immediate needs. (where they can bring local knowledge, i.e., knowledge of what works in their particular contexts, to bear) 

For example?

I've written about the challenge of having as a parent to juggle so many different health care providers. There has to be a saner way. Since no clear-cut solution has shown itself, however, maybe a collaborative community could help? Maybe said community could look at the pros and cons of -- one plausible solution -- training and churning out more physiatrists? As an alternative, care maps seem to hold promise. (See my Thanks For Asking.) Maybe a parents' working group could form around using and maximzing their potential for our purposes? Both of these seem like the sorts of projects that would be well in line with, and that would advance the missions of, a UCP or RFTS.

MISSION DRIVEN

Another general starting place would be to ask (as a leader of an organization) what stands between where you are now and where you want to be: What are the key challenges or opportunities your organization needs to be work on, and could community collaboration be applied as a way of delivering value? Could it be employed to move projects forward?

Projects?

Projects that have been started but not completed. Projects to which you've committed but not yet planned out. And also... 

"Look into" projects. Per personal productivity guru David Allen, "One of the most interesting, subtle, and underutilized distinctions is whether a possible action or project is one that should be moved on, or whether it can simply be started at a later date, or perhaps not moved on at all." Here's how he describes his own look intos: 

My personal Someday /Maybe list is quite a bit longer than my active list of projects. It includes some ideas on one end of that spectrum that I would consider in the "fantasy" category -- like taking a canoe trip down the Mississippi River. On the more "realistic" side, it contains projects like scanning my old photos for digital storage and rewriting a segment of our Web site. Nothing in this category has a specific next action attached to it-- that's a defining characteristic.

I'm curious to know how many of our CP-facing-organization leaders keep a formal, up-to-date Someday /Maybe list?

Here are three (3) would-be projects of my own that could conceivably be tackled by collaborative communities:

• keep abreast of how other diseases or conditions are being chipped away at and beaten (from a management perspective) 

• map the relevant, ongoing CP-related research in one place (could be a wiki, or a mindmapping, or a database project) 

• How about a wiki or mindmap covering all the therapeutic and other interventions being offered around the globe, along with their various providers? This recently published CP Alliance and Notre Dame research analysis, A Systematic Review of Interventions for Children with Cerebral Palsy: State of the Evidence, would be a terrific jumping off point. 

Projects can originate from every part, i.e., from every level, of an organization, and can address the most mundane to the most sublime of intentions -- even an individual organization's missions, visions, and values. Even the direction our multi-stakeholder networks* seem to be heading together. 

At least a couple of visions seem to be coalescing around expediting CP-related research, medicine, clinical trials, etc. I'm all for them, but I'd also remind leaders that their visions are no more than human-made, mental constructs. They're sets of ideas that, bluntly, and not to be discouraging, score a zero percent (0%) on the "how they favorably impact my daughter's life today" test -- and that are also subject to being wrong in whole or in part. The only way to find out is to test, test, test them. If we want to be social-scientific in our approaches, we should be transparent. We should expose our thoughts about the future -- today -- and invite as much commentary from as many smart people as we can. 

Who's to say what a collaborative community made up of lots of engaged CP parents and others...working together online, making said planning and visioning their own, taking it to heart...could or couldn't contribute?

* alliances, consortia, partnerships and the like 

ROUND TWO: Classified Info (Part C)

That UCP's "Life Without Limits" vision applies to people with a whole spectrum of disabilities has me wondering. Including multi-stakeholder networks, I've identified, for classification purposes, five (5) CP-fighting sectors. Wouldn't it be nice to be able to locate the orgs and indivs within them along various spectrums / spectra or continuums / continua -- so that they'd be closer to or farther from "focused on CP," closer to or farther from "operates in the health arena," closer to or farther from "provides direct care," and so on?

That's just one thing I'd like to be able to do. More generally, I'd like to be able to quickly and easily manipulate my data. (aka the folks I'm following on Twitter and what I know about them) How come? To see what the landscape would look like if it were rearranged in various ways. To look for patterns. To gain insights about relationships, etc. 

Enter mind mapping. 

A mind map is a graphical way of expressing what's in your head; a means of displaying the connections your mind makes. (From the play Who's Afraid of Virginia Woolf, I always remember George, one of the two main characters, jokingly referring to an abstract painting as "a pictorial representation of the order of [his wife] Martha's mind.") By definition, a mind map is a visual thinking tool that helps you structure information and better analyze, comprehend, synthesize, recall and generate new ideas. 

I'm in the process now of transferring my Twitter "Following"s into an online mind mapping program so I can structure them as I see fit. I'm using my five-sector framework as a basis for grouping. I've also started to add Web site links to some, thinking that this could be useful / powerful down the road.

MindMeister.com is the service provider. As it says on its site, "It's very hard for two people to write notes on the same piece of paper, but it's easy for them to share a digital mind map. Mind maps are open and friendly and invite input from everyone. If you're working on a complex project with a large team of co-workers, you can create a mind map, share it with them and encourage everyone to annotate it."

The real potential lies in this idea of using maps collaboratively. Like I said before, my map is crude at this point; only a hazy beginning. The new formula for getting better faster, however, is to put things like it out in public and to invite others to use, make comments, etc. Mine isn't public in the sense that others can add notes or make changes, but those capabilites are there. 

If you'd like to take a closer look at the actual map, here's a direct link:  http://www.mindmeister.com/311249601/who-can-help-us-ko-cp.