
I hunkered down at the library this week, working on a couple of long-term projects.
I kept one eye on Twitter, though, as I always do, and wanted to share what distracted — and inspired — me this week:
Radiolab: Worth — what would you pay for another month of life? How about a year? They get into the debate about Solvadi, which I find fascinating, and wind up talking to patients, “the people who aren’t at medical conferences.” Thanks to Mike Evans, MD, for tweeting the link.
Pew Internet: Social Media Site Usage 2014 — 81% of U.S. adults use the internet and, of those, 71% use Facebook, which is really pretty astounding (and is an opportunity for health intervention and support).
Pair this data with one 19-year-old’s view on social media and with Ev Williams’s essay about the different levels of engagement on each platform: A mile wide, an inch deep.
Diabetes: In my continuing quest to better understand what life is like with diabetes, I took a deep dive into Kerri Sparling’s personal story of complications related to her T1D and then explored a “411” round-up of complications on DiabetesMine.
Cystic fibrosis: I’m also trying to better understand what life is like with cystic fibrosis — and to join in dreaming of a better future — so I’m following #CFBigIdea. And, sorry if the language offends you, but Erin Moore is right — we have reached the “fuck-it point” in cystic fibrosis innovation:
Disruption: This story about the danger of calling Uber a tech company is worth your time, especially if you join me in thinking about parallels with health start-ups:
Disrupting a physical-world service is a terribly costly, time-consuming, and maddening endeavor and it’s why the company has had to become experts in local city regulations in roughly 50 different American cities. It’s precisely because of these hurdles that any tech reporter who spends their time covering the sharing economy is now, essentially, a labor reporter.
Costly, time-consuming, maddening? Check. Antiquated, ridiculous flaws in our regulatory systems? Check. Are health reporters up to the task of covering our emerging industry? Are tech reporters? An open question.
Cluetrain Manifesto: Doc Searls and Dave Weinberger released some new clues. My favorite quotes:
“It’s important to notice and cherish the talk, the friendship, the thousand acts of sympathy, kindness, and joy we encounter [online].”
“The Net offers us a common place where we can be who we are, with others who delight in our differences.”
“Caring — mattering — is the motive force of the Internet.”
Culture of health: Joe Marx, an Robert Wood Johnson Foundation colleague, shared Tucker Nichols‘s wonderful “conversation topics” cloth napkin with me. I love Joe’s vision to use the concept to spark conversations about the culture of health:
I was honored to play a part in two friends’ blog posts this week:
- Care Models That Work, by Amy Romano, MSN
- Forgive Yourself In Advance, by Wendy Sue Swanson, MD (yep, it was me who gave her that advice)
And finally, because running is part of my workflow now, this poem shared by Amy Shimshon-Santo resonates with me:
Thank you Susannah….I was literally reviewing some literature on older adults and the use for on-line communities for self-management support of illness when this posting popped up and reminded me to check the PEW data. Thanks for the inspiration!!
Big smile here. Thanks for letting me know that serendipity is hard at work today (was there a Greek or Roman god of serendipity? It’s as powerful force as love in my life.)
Lately your posts make me feel overstuffed before I start replying.
First:
The Solvadi story makes me feel almost violently ill (or pathologically violent). I think the HIV/AIDS analogy is valid, and gives a hint of a success that may be lying unrealized because of the inventors’ greed. I have nothing against ROI for the work of discoveries but there are some cases that transcend business.
For those who think giving away vital inventions is bad business, I’ll point to Tesla’s announcement last year of open-sourcing one of its things; this article cites precedents for some pretty significant life-saving patents being given away:
___________
“Mercedes-Benz holds a number of patents for safety features such as anti-lock brakes that it allows other car-makers to use in the interests of increasing the passive safety of vehicles worldwide.
Last month, Ford said it would allow other car-makers to use its airbag-equipped seatbelt technology under licence for free.
“Technology leadership is not defined by patents, which history has repeatedly shown to be small protection indeed against a determined competitor, but rather by the ability of a company to attract and motivate the world’s most talented engineers,” Mr Musk said.
____________________
Business people, think about it. I know you spend a lot to develop things, and I know most of your inventions don’t pay off. And I know most of you have soulless investors breathing down your neck, and others have decent investors. Just think about it. Think about the HIV/AIDS precedent, Mercedes, Ford, and Tesla.
Re @ev’s post about Twitter vs Instagram: I couldn’t agree more that “total time reading” is the real metric. Anyone who’s looked at Google Analytics for their web traffic should know that the usual time on a site is nothing (“bollocks,” as I’ve heard several times here in London this week).
On a related note, as a TED speaker, I discovered some years ago that the real metric isn’t “views” (which is only how many people started watching), it’s “completes” – how many people stayed through the end. As far as I know, ya can’t get THAT number out of Google nor out of TED, because that’s the real gold. “Views” is a head-fake.
I bet one reason TED Talks are told to be shorter these days is that TED is really only about the eyeballs, not about the big ideas as they claim, and that the data showed hardly anyone was watching the second half of anything.
Grabbag of the rest:
– Anyone in our middle-age-and-plus age group who thinks they know social media had better read that teen’s post
– I totally don’t get that napkin thing. Makes no sense to me, in any way. But sometimes lately I feel like RWJF has gotten waaaaay far away from reality, becoming a navel [sic] abstraction factory. I just don’t understand.
– I also don’t get Erin’s eff-it point – I get that the graph says both expectations and anxiety have risen, but I don’t see how it leads to that conclusion (which sounds like either “I give up. I quit” or “I’m tired of waiting; I’m gonna go dynamite someone.”)
Blessings on you for both the disruption and Cluetrain items. Off to read them – did you intentionally aim them at me?? Doesn’t matter, just wondering.
Your comments are a prime example of what I hope my blog is: a place for all of us to exchange ideas despite not sharing the same time zone or physical space.
When I’m not at a consulting or speaking gig, I’m on lockdown, writing. I hope nobody is offended that I essentially never accept lunch or phone dates these days, but the reality of my life is that I can only pop up to the surface when I’ve completed my writing for the day and I don’t know when that will be. So I use Twitter & this blog to share and chat when I do get a break.
Re: the napkin. It’s an example of a lark, a spark, a “How might we…” or “What if…” inspiration. How might we spark conversations about health in a new way? How might we leverage the dinner table to build a culture of health? It’s not a policy program or (yet) based on evidence. And that is what is actually kind of cool about it, since so much of the Foundation’s work is weighty, evidence-based, and policy-oriented.
I’m interested in your negative impression of RWJF. Up close (since I get to visit once a month) I find every person I meet to be practical and focused on changing the world for the better, not navel-gazing or abstract.
I also look at the Foundation’s new “culture of health” goal with great empathy. They are simultaneously changing the internal structure of the Foundation AND entering into a public conversation that is very different from the work they have done in the past. Culture change is very, very different from policy work. They are approaching both changes with intellectual rigor and, since I’ve seen organizational change at previous jobs, with a remarkable unity of purpose. But I think they also understand that they have to engage artists, families, many other stakeholders in this endeavor. That’s what the napkin idea symbolizes.
Now: they pay me (25% of my time is devoted to RWJF). But I do not speak on their behalf and you (Dave, others) know me well enough to know that I wouldn’t write or say something publicly that I don’t believe.
I’d welcome more ideas about how to recognize when cultures shift or change (esp for the better and esp in response to stimuli that can be recreated).
Totally understood that you wouldn’t say anything you don’t believe. 🙂
I guess a growing part of me (not just in this conversation) is growing tired of talk, talk, talk, talk, talk, analyze, think, talk, talk with no apparent sense of impatience that things aren’t changing. (This is my massive pet peeve with the “transparency” conferences and coverage.) In short, to someone who’s suffering (medically or financially or in any way), and has been working to create change, there comes a time when it’s just not enough to keep talking.
You know I know about culture change; it’s the core of my own work, I cite precedents, I try to trigger it, I know it’s one of the main reasons things don’t improve. So I’m not against culture talk per se. I’m just increasingly conscious of how many lives continue to be lost to mistakes in US healthcare, how much money continues to be lost, while all the studying keeps going on.
So who knows, maybe I’ll be migrating away from the study area and trying to create tangible change. My gut says that’s what I like about OpenNotes (which was, of course, a great big RWJF funded project!)
Soul-searching / identity searching going on here, I guess. I guess it’s comparable to something you said a few years ago – I don’t remember it specifically – about “I’m deciding it’s just not okay” for things to not change. And something about not liking inaction. Sorry I can’t recall the specifics – I don’t know if it was personal/family or business.
The Uber post you linked to … that is itself a rat’s nest. I totally agree with the guy about the enormous difference between “just add more servers” and creating something that scales in the physical world, with all kinds of real risks. Having said that, Uber exhibits some really nasty behavior (with human impact) in its pursuit of a universal rule of tech explosions going back at least to the ’90s: “Just ship.”
Geoffrey Moore’s game-defining books about innovation and explosive growth spotlighted that there’s a time in the growth of a market where, in the end, NOTHING matters except whether the company put every bit of everything it had into shipping as much as it could, because in this stage the ONLY thing that ultimately matters is how much market share you get. So, to hell with everything else.
Here’s how that played out for me, twice. 20 years ago the Zip drive was a big deal. In those days there was no free cloud backup, nothing of the sort – people were learning the hard way that data really can disappear, and people in (e.g.) the graphic arts were discovering the difficulty of shipping great big data files around. So the Zip drive (images) was a big deal. I, like many, used one. And sooner or later it broke. So I sent it in for warranty repair.
Two weeks went by, and I called, and you know what they said? They wouldn’t even go LOOK to see if they’d even RECEIVED it if I couldn’t fax them proof that I’d sent it by something like FedEx! That’s what “just ship” looks like in the customer world. They simply denied I’d sent it, unless I could prove they’d signed for it.
Five years later I sent in a Canon digital camera for warranty repair. They didn’t deny I’d sent it, but they had no idea – there was no tracking of anything. They simply went and hunted in a pile and found it two days later. THEN I promptly got it back.
So, yes, businesses that involve physical things require a different kind of competence than just flinging some software onto a server and sorta-caring whether it works.
Meanwhile, I’ll point out that Amazon seems to have that logistics thing nailed down really well.
With one exception: y’know their CreateSpace self-publishing print on demand subsidiary? Two years ago Paul Levy learned, and last year I learned, that sometimes they outsource the printing to another print shop (fine with me), and when they do, they stop tracking the order. Totally. Permanently. Completely.
I don’t get it. They can no longer say the order’s status, and they abdicate all involvement with the shipment status. (Paul’s 900 books arrived months late, having been discovered in Iceland via USPS, non-trackable, and my 100+ simply simply disappeared… they too had been shipped untrackable.)
So yeah, physical things are a different business. And I really don’t understand why Amazon’s Bezos lets that happen. It just doesn’t add up.