I woke up this morning, early, to an email from my mother-in-law pointing me to this:
It’s the story of a 9-year-old boy who built an arcade out of cardboard boxes in his dad’s used auto parts shop. Kids at school teased him about it, and he had zero customers, but he had built something awesome. A filmmaker happened to stop by one day, was (rightfully) amazed, and did a short film about it, including organizing a flash mob to help get Caine some customers. Simple, and totally awesome in its own right. Since then:
“• Over $231,000 has been raised for Caine’s Scholarship Fund (which has been officially & formally set up!) thanks to over 19,000 individual donors
• Over 7 million views on YouTube and Vimeo
• Over 1 million views on our Part 2 followup Video
• Launched the Imagination Foundation and our first annual Global Cardboard Challenge with over 270 events in 41 countries engaging tens-of-thousands of kids worldwide in creative play.
• Caine was the youngest ever entrepreneur to speak at USC Marshall School of Business, Cannes Lions International Festival of Creativity, and recently spoke at TEDxTeen hosted by Chelsea Clinton. Caine also received the Latino Spirit Award from the California State Assembly, and a cardboard key to the city.
• Thousands and thousands of visitors to Caine’s Arcade (he still gets hundreds of customers every week!)
• Launching an Imagination campaign to engage 1 million kids in creative play”
…. which led me to revisiting Kid President, a youtube star who helped publicize Caine’s story. I had forgotten about Kid President — he’s a young person (11 years old now) who gives amazing video pep talks (like this one for moms). Turns out Kid has his own amazing story — he suffers from Osteogensis Imperfecta, or “brittle bone disease”, an incurable disease resulting in a lifetime of broken bones. But he has compensated with an outsized positive outlook:
… which led me to checking out SoulPancake, Rainn Wilson’s production company which now backs Kid President, and which is dedicated to “chewing on life’s big questions.”
… which reminded me of my other favorite youtubers, the Gregory Brothers, who have made incredible incredible videos “songifying” the news and other videos (my favorite is Double Rainbow, a songification of this). Here is their behind-the-scenes look:
… at the process that resulted in this — the songified final 2012 presidential debate:
… the point of all this being: holy shit! Kids. Making amazing stuff. Making the world better. Building huge audiences. I am awestruck and inspired.
And then, I start thinking about how amazing it is that this is possible. Because on the internet, everyone has a voice and can reach the world — being a 9-year-old kid building an elaborate box arcade isn’t weird, it’s fantastic. Having an incurable bone disease isn’t a death sentence, it’s an opportunity to inspire people. Being a crazy musical/artistic/geeky family isn’t strange, it’s awesome.
And then, I remember that it hasn’t always been this way. Before the internet, none of these stories would have happened. None of the tens of millions of people who’ve been touched by them would have been reached. Connecting to the world required the permission of a big company, like a record label, TV network, or movie studio.
And finally, I remember that it might not always be this way. The “openness” of the internet — the ability for anyone to reach everyone, on equal terms — isn’t something we can take for granted. It’s very much in contention. It’s a battle — and one that we might not win, unless we get equal parts inspired, pissed, and organized.
I am more comfortable using Diaro as my journal because they don’t keep the data, I do (sort of — really Dropbox does, but it’s my dropbox acct and I can take it/delete it whenever I want). I think that may have actually been my deciding factor in choosing Diaro.
In this particular case, using Dropbox has the added (I’d say necessary) feature of syncing across devices so any apps that store user data there can see it anywhere and not have to worry about managing it.
It’s also interesting to note that this wasn’t really the #1 use case (afaik) for Dropbox. But it does seem to be a natural (albeit relatively fringe) additional use case. And I wonder if we will see an increasing number of apps (maybe health?) take this route, and marketing it to privacy/control conscious users.
I had crazy week last week.
On Monday, I went to NYC for the day for work, and was overcome by a strange dizzy feeling. Walls spinning; hard to concentrate; nauseous. I thought — maybe I’m just dehydrated. I took a rest during the middle of the day; I drank a lot of fluids. I made it back to Boston that evening — barely — and went straight to bed, assuming all would be clear the next morning.
When I woke up, the walls were still spinning, just as they had been. I started googling. Now — it’s important to note that I don’t have a standard health profile — 5 years ago, right after our son was born, I discovered that I had several large blood clots, in my intestines and in my head, and I’ve been seeing hematologists, neurologists, and rheumatologists, and have been on blood thinners, ever since. As you can imagine, the intersection of “dizziness” and “blood clots” is not a good one.
So I headed straight to the ER Tuesday morning, and ended up being scanned, tested, and admitted overnight. Turns out I did not have a stroke, but rather I have Vertigo caused by an enflamed cranial nerve (likely due to a virus of some kind). Vertigo is a really strange thing: first, it’s amazing how much we take for granted our brain/body’s ability to understand and interact with the space around us; when that stops working, it’s very distressing. And second, it’s (perhaps even more) amazing how well the brain can adjust, adapt, and re-learn, when certain things stop working the way they had been — I’ve been doing PT to re-train my brain, eyes and ears to understand what’s moving and what’s not moving, and where I am — and it’s been surprisingly effective.
But that’s not the point of this story. The point of this story is about how much effort, charm, and determination it takes to get effective medical care — even in the best case scenario with excellent health insurance, great hospitals, and top doctors.
One of the toughest things about last week was getting all of the doctors on the same page with one another. I’ve got a PCP, a rheumatologist that I used to see in NYC, a history of cat scans and MRIs (from NYC and Boston), a hematologist in Boston — and now as of last week, a Neurology team in Boston following my case.
All of these doctors — each of whom knows a piece of my story and has expertise to offer — do not have a way to talk to each other, and their method of sharing information is outdated at best.
The result of this situation is a mad scramble. Trying to get record requests initiated. Trying to compare new images to old images. Trying to get the specialists to weigh in with each other or at least communicate at all. Trying to figure out where the PCP is. Waiting on hold. Leaving messages for doctors that don’t get returned. Being scheduled for new cat scans and MRIs that may or may not be necessary — if only all of the doctors could communicate with one another, and work off of the same set of information.
For instance, the day after I was discharged from the hospital — and we headed to Cape Cod for what remained of our attempted family vacation — the Neurologist in Boston called and said they noticed something new on the cat scan from two days prior — and I needed to come back in for another scan. That meant a 4 hour drive, finding someone to watch the kids (luckily both sets of grandparents were with us), another night away, and another day worrying about what could be. And it’s altogether likely that better communication among doctors — and easier use of past records — would have made this unnecessary.
Luckily for me, I have a secret weapon. My wife. When it comes to medical issues, she has been through a lot — in particular, a decade of dealing with Chron’s disease and Thyroid Cancer. She has learned — the hard way — what it takes to get through the confusion, uncertainty, bureaucracy, under-communication and fear of having a complex medical situation. She know that you not only need to get connected with the right care at the right time, but you have to be a quarterback, pitbull, and snake-charmer at the same time to get things to happen.
In her words, you need to be the sweetest pitbull.
Never ever go away or let anyone off the hook, while at the same time, get everyone to like you and care about you.
My attitude is a bit different — I try to avoid being a burden, and tend to assume that people will do their jobs correctly if you let them. I leave messages.
Frannie’s approach is different. On Thursday when we went back for my additional cat scan, we showed up in person at the Hematology unit and the Neuro unit — unannounced; no appointment. We tried to make friends with the receptionist (critical). For a moment, it seemed like she would brush us off, but then she said “well, let me call the head nurse and see if she can come talk to you.” Bingo.
The head nurse (an angel if there ever was one) came out and saw us. Carved out a few minutes to talk. Mid-sentence, as I was explaining my situation, she ducked out of the room and came back with record requests forms for NYC. With her other hand, she dialed in the scheduler for the next possible appointment and got me set up. With her other hand, she took down the Neurologist’s information so she could coordinate with him. With her other hand, she had NYPH records department on the phone. With her other hand, she scribbled down her direct line, her pager number, and the Hematologists cell phone number. She had a lot of hands and she was using them all at once. Because we were sitting there.
When we were done I gave her a huge hug and actually cried a little. The difference between having a person who knows you, sees you, and can move the gears of medicine for you — and a person at the end of a phone line or email — is astounding.
And I would never have gotten there were it not for the sweetest pitbull gnawing and smiling our way in.
I guess the point of this story is that it shows me how broken the medical system is. Even in the best case, there is such a lack of communication, coordination and information sharing. Data is everywhere and nowhere. Decisions are slower and harder to make than they should be. Expensive diagnostics are over-used. Every patient needs their own sweet pitbull to help pry the doors open and get the system to pay attention them and care about them.
Thinking about this in terms of apps and data — it showed me, crystal clear, that there’s got to be a better way to do medical collaboration. What I wanted, throughout all of this, was a simple private chat room for me and my doctors — all of them — that provided easy access to my history of records, diagnostics, and care providers, across locations and hospital networks. A place that let me — and them — ask questions and get answers, and keep everything in one place that everyone could work from. Of course, there are untold barriers to this vision: insurance, risk/liability, data security. But it seems obvious to me that that’s the future we should be shooting for.
In the meantime, we can simply hope to recruit the sweetest pitbulls to have our backs. I know I am super thankful to have mine.
I spent the last two days in meetings with FCC Chairman Tom Wheeler and his staff, discussing their proposed Open Internet rules (aka net neutrality). Monday’s meeting was with a group of NYC VCs, and Tuesday’s meeting was with group of NYC startup CEOs and GCs.
Coming out of these meetings, and after working on this over the past several months, a few things have become increasingly clear. Specifically, what we mean when we talk about the “freedom to innovate” and why it’s important for the future of the internet (both infrastructure and applications).
The question that the Chairman opened both meetings with was: how can the FCC achieve the dual goals of “access” and “flexibility”. ”Access” meaning the ability for websites, startups, apps and content providers to reach end-users (and vice versa), and “flexibility” meaning the ability for internet access providers to expand and improve their networks in new (and potentially unexpected) ways.
Access: innovation without permission (on the network)
Yesterday’s startup meeting led off with each company talking about why the open (non-discriminatory, non-prioritized) internet mattered to them — in particular, why it mattered to them when they were just starting out.
Eli Pariser from Upworthy put it perfectly, when he said: “I’m here because I’ve thought a lot about the tests you have to go through as a startup CEO. And I’m very thankful that one of the tests I *didn’t* have to pass was the Knows How To Negotiate A Complex Deal With A Large Telecommunications Conglomerate Test. I’m not sure many of us could have passed that test in the early days of our companies.” Amen.
Many companies noted how long they had operated before they need to hire a biz dev person or an in-house counsel. David Karp from Tumblr noted that their GC was hire #37 (this was considered early) and they didn’t hire a biz dev person until the company was 7-1/2 years old. Chad Dickerson from Etsy noted that their first GC was hire #500. Erik Martin, GM of reddit noted that they he is their policy person (out of a staff of about 50). Every company in room was able to reach and serve millions of users and customers without having to negotiate a pay-to-play deal with a carrier first.
The buzzword idea is “innovation without permission” — the ability to launch an app, try out an idea, start writing, start competing with the big boys, start gaining real users, just by hitting enter. Anyone — a 16-year-old kid with an app or a 75 year-old grandmother with a blog — can simply start. No need to hire a lawyer, negotiate a deal for access, or (in the worst case) file and litigate a complaint with the FCC.
Then, as David Pakman put it in the VC meeting, “the users can king-make the apps” (as opposed to the carriers charging, and picking, winners).
This is what brought us the internet we have today, and this is the world I want to live in.
Flexibility: freedom to innovate (in the network)
Regardless of whether we want ISPs to “innovate” in the first place, a central and critical question in the open internet debate is how to stimulate ongoing investment in our internet infrastructure. To make internet faster, cheaper, and better for everyone.
This is the contentious issue. Some argue that open internet rules would remove incentives for investment in infrastructure, by limiting the ways internet access providers are allowed to charge.
In the VC’s meeting on Monday, my colleague Brad said the following (as published in the forthcoming FCC ex parte filing — emphasis mine):
Mr. Burnham pointed out that the relationship between innovation in the network and innovation on the network is more nuanced than often assumed. For example, integrating the network more closely with applications by making the network application-aware may be advantageous from a business perspective, because it allows access providers to control the economics and the innovation at the application layer. Mr. Burnham recalled that when he worked at AT&T, at a time when that company introduced several application aware network architectures in an effort to compete with Internet, the network engineers there were so worried that changes in the network would break applications, that innovation in the network was very rare. At the same time, investment and innovation in and on the Internet was growing exponentially because the Internet’s layered architecture separated the applications from the network and allowed each to evolve independently. He argued that regulatory policy that continues to separate the network and applications layers by requiring ISPs to manage their networks in ways that are application agnostic will promote innovation not limit it.”
In other words, separating the applications layer from the network layer actually stimulates investment in both, by giving both the freedom to innovate.
The Virtuous Cycle
This brings us to a central idea:the “Virtuous Cycle” of innovation and investment:
This theory of innovation and investment — in both the applications layer and the network layer — is the core idea behind the FCC’s 2010 open internet rules. And, contrary to what many critics argue, this rationale was not overturned in the recent court case vacating the rules. Rather, the court simply ruled that the FCC could not enforce those rules without reclassifying ISPs as “telecommunications services” under Title II. From the court’s decision:
"Internet openness, it reasoned, spurs investment and development by edge providers, which leads to increased end-user demand for broadband access, which leads to increased investment in broadband network infrastructure and technologies, which in turn leads to further innovation and development by edge providers." (link)
"[The FCC’s] justification for the specific rules at issue here—that they will preserve and facilitate the "virtuous circle" of innovation that has driven the explosive growth of the Internet—is reasonable and supported by substantial evidence. " (link)
So that’s where I’m at right now. I believe in the power of innovation without permission. And I believe that we need to stimulate expansive and ongoing investment in our internet infrastructure. And I think the best way to do that is to align everyone’s incentives and give everyone the freedom to innovate.
 Companies attending the 7/15/14 meeting: BuzzFeed, Codecademy, Dwolla, Etsy, Foursquare, General Assembly, Gilt, Kickstarter, Meetup, Reddit, Spotify, Tumblr, Upworthy, USV, VHX, Vimeo, Warby Parker