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