Pioneering Ideas: How Can Health Data Transform Health and Health Care? – As this blog post says, the Robert Wood Johnson pioneer portfolio is at the famous conference that has the same name as mine.
As I received this message from the PR agency promoting this work on behalf of the Robert Wood Johnson Foundation, asking me to post the information (which I get regularly from various organizations, I pick and choose what are relevant, organizations are discovering the value of social media):
This week, the Pioneer Portfolio will be at TED2010. While they are there, they will be engaging in discussions about what they see as a truly revolutionary movement in health care toward an approach that is more data-driven and patient-centered. We’ll be sharing that conversation on Twitter by using the hash tag #pioneerdata.
I also was reading this post:
Live-Tweeting Events is Dying. What Can Be Done? – Mark’s Cheeky Posterous
About why or why not Live-Tweeting events is useful or if it should change/morph, and it made me pause and do a little thinking.
I am a “serendipity’s coincidence” user of Twitter, so I see what I see whenever I see it, so it feels to me like livetweeting is waning, but I don’t know if it is or not.
Then, I watched the YouTube video posted in the above RWJ blog (which stars some of my favorite people) and thought about some of the comments which were that “data is only useful if it’s actionable/contextual.”
Live-tweeting being potentially useless, data only being useful if contextual and actionable….
I didn’t come away with any disagreement of the above ideas at all. Just a twist – the LEAN/Toyota (yes, Toyota) expression, which is, “Seeing the impact of what you do.”
And so, here’s my tie-in of all of this – I think data by itself IS useful, and Live-tweeting by itself IS useful.
Why? Because if the impact that comes from making it available in the first place.
On the issue of livetweeting, it may not matter to me whether an event is livetweeted or not, or whether those tweets cause me to take action. It does, however, matter, if an event is not allowed to be livetweeted or such transparency is encouraged. About a year ago, I was invited to an event hosted by an organization that I am not affiliated with and summarily told that no tweeting would be allowed. No discussion about whether this could be done responsibly, or whether there could be benefit from the work and ideas of such happening. Just, “No.”
The impact? If I were to be invited by that same organization to another event, I would prioritize an event that’s more open, or I’d decline altogether, mostly because I’m concerned that the interest in learning and growing just isn’t there.
On the issue of data being actionable, I encourage people to think about just the impact of the data being available, and honestly, I worry that the expression, “it has to be actionable” will be used by some with less noble intentions to decide, “therefore we shouldn’t make it available.”
So in conclusion
- Let Live-tweeting continue to serve as a marker of openness rather than of an organized approach to sharing information. If both happen, terrific.
- I respect the RWJ Pioneer Portfolio as a “portfolio” of great ideas, and therefore my favorite project has to be the My Open Notes project (official site here), because it’s about making information available first.
With thanks and respect for the great ideas in the above blog posts, and I hope that My Open Notes demonstrates what others have written about for over 40 years, that this topic didn’t need to be researched in the first place….


I am at the Project HealthDesign Expo here in my hometown, along with many many other leaders in the personal health records world, including several members of the CCHIT Personal Health Records Workgroup.