I was ten years into a career as a user experience designer making new digital products when diabetes blew my family's life apart. The complexity and relentlessness of the burden of care that came with my youngest daughter's diagnosis at 1.5 years old, were overwhelming. I learned that people with diabetes are always 10 minutes of inattention away from a coma. Run your blood sugar too low and risk brain injury or death. Run too high and you do cumulative damage to your organs, nerves and eyes. And as a designer and hardware hacker I couldn't accept the limitations and poor User Experience I was seeing in all the tools we were given to deal with it.
Then I discovered Nightscout (a way to monitor my daughter's blood sugar in real time from anywhere in the world) and Loop (a DIY open sourced, artificial pancreas system that checks blood sugar and adjusts insulin dosing every five minutes 24/7) and the #WeAreNotWaiting community that produced them. For the first time I saw the kinds of tools I needed and true power of solutions that come from the people living with the problem. When I learned about the Tidepool's project to take Loop through FDA approval and bring it to anyone who wants to use it to give the same freedom and relief that we've experienced from it, I had to get involved. Now we are taking an open source software through regulatory approval and using real-life user data from the DIY community for our clinical trial in a process that is turning heads in the industry. We'll get into the many ways this story demonstrates ways that user driven design, open source models and a counterculturally collaborative approach with regulators are shifting the incentives and changing the landscape toward one more favorable to innovation.
Here’s the video I mentioned yesterday. Those deeply enmeshed in the IndieWeb movement and many of its subtleties will get a ringing sense of déjà vu as they watch it and realize there’s a lot of overlap with how (and why) Matt Lumpkin is working to help those with type 1 diabetes and the IndieWeb. Perhaps there are some lessons to be learned here?
Syndicated copies to:
There was an eerie and surprisingly large overlap of a lot of what Matt Lumpkin said in his talk this morning and the IndieWeb movement. If you just change the disease from Type 1 Diabetes to Social Media, there are a tremendous number of similarities between the two approaches of problems to be solved in terms of giving people agency, ownership of their data, the silo nature of the big corporations in the space, and the lack of solid inter-operability and standards.
I can’t wait for Chuck Chugumulung and the gang to get the video for this week up on YouTube so I can share it with colleagues.
Based on what I’ve heard, it might not be a completely terrible thing to class what the IndieWeb is working on fixing as a broad public health issue–but in its case a mental health one instead of a pancreas and diet related one.
Social media and kids, Google fiber fail, 5G dreams, and more.
Surprise: young people use social more than the oldsters. Some of them even use Vero. Samsung Galaxy S9 takes top marks for display and camera. Google Fiber didn't go quite as planned. Feds in your iPhone? It's more likely than you think. Amazon buys Ring, can now see and hear everything. US vs Microsoft II: The Revenge of the Irish. GitHub gets gotten by the biggest DDoS EVER.
There’s a great conversation in this episode about open platforms and why they’re important. The basic conversation starts around 12m19s, but really gets going at 16 minutes in and continues through to about 26:30. It includes some great examples of text messaging, social media companies, reservation systems and how they work either for the good or the bad based on how open or closed they are. It becomes a textbook set of cases for why the IndieWeb movement is important.
For those interested in just this short 10 minute section you can listen below on this bookmarked version of the audio:
Another interesting sub-segment is at 17:13 where Dwight Silverman comments that he knows many people who’ve removed social apps from their cell phones, including Leo Laporte. I’ve done this nearly a year ago and recently Dries Buytaert mentioned he’s done it as well. There’s also a recent article by Farhad Manjoo in the New York Times that he’s done something similar with solid results. For a list of people who’ve gone further, check out this list of silo-quits.
Fragmention is a portmanteau word made up of fragment and mention (or even Webmention), but in more technical terms, it’s a simple way of creating a URL that not only targets a particular page on the internet, but allows you to target a specific sub-section of that page whether it’s a photo, paragraph, a few words, or even specific HTML elements like <div> or <span> on such a page. In short, it’s like a permalink to content within a web page instead of just the page itself.
A Fragmention Example
Back in December Aaron Davis had made a quote card for one of his posts that included a quote from one of my posts. While I don’t think he pinged (or webmentioned) it within his own post, I ran across it in his Twitter feed and he cross-posted it to his Flickr account where he credited where the underlying photo and quote came from along with their relevant URLs.
Fragmentions could have not only let him link to the source page of the quote, it would have let him directly target the section or the paragraph where the quote originated or–even more directly–the actual line of the quote.
This can be a very useful thing, particularly on pages with huge amounts of text. I use it quite often in my own posts to direct people to particular sub-parts of my website to better highlight the pieces I think they’ll find useful.
It can be even more useful for academics and researchers who want to highlight or even bookmark specific passages of text online. Those with experience on the Medium.com platform will also notice how useful highlighting can be, but having a specific permalink structure for it goes a step further.
I will note however, that it’s been rare, if ever, that anyone besides myself has used this functionality on my site. Why? We’ll look at that in just a moment.
Extending fragmentions for easier usability.
Recently as a result of multiple conversations with Aaron Davis (on and between our websites via webmention with syndication to Twitter), I’ve been thinking more about notes, highlights, and annotations on the web. He wrote a post which discusses “Page Bookmarks” which are an interesting way of manually adding anchors on web pages to allow for targeting specific portions of web pages. This can make it easy for the user to click on links on a page to let them scroll up and down specific pages. Sadly, these are very painful to create and use both for a site owner and even more so for the outside public which has absolutely no control over them whatsoever.
His post reminded me immediately of fragmentions. It also reminded me that there was a second bit of user interface related to fragmentions that I’d always meant to also add to my site, but somehow never got around to connecting: a “fragmentioner” to make it more obvious that you could use fragmentions on my site.
In short, how could a user know that my website even supports fragmentions? How could I make it easier for them to create a fragmention from my site to share out with others? Fortunately for me, our IndieWeb friend Kartik Prabhu had already wired up the details for his own personal website and released the code and some pointers for others who were interested in setting it up themselves. It’s freely available on Github and includes some reasonable details for installation.
So with a small bit of tweaking and one or two refinements, I got the code up and running and voilà! I now have a natural UI for highlighting things.
What else would be nice?
I can’t help but think that it would be fantastic if the WordPress Fragmention plugin added the UI piece for highlight and sharing text via an automatically generated link.
Perhaps in the future one could allow a highlight and click interaction not only get the link, but to get a copy of both the highlighted text and the link to the URL. I’ve seen this behavior on some very socially savvy news websites. This would certainly make a common practice of cutting and pasting content much easier to do while also cleverly including a reference link.
Medium-like highlighting and comments suddenly become a little easier for websites to support. With some additional code, it’s only a hop, skip, and a jump to dovetail this fragmention functionality with the W3C Webmentions spec to allow inline marginalia on posts. One can create a fragmention targeting text on a website and write a reply to it. With some UI built out, by sending a webmention to the site, it could pick up the comment and display it as a marginal note at that particular spot instead of as a traditional comment below the post where it might otherwise loose the context of being associated at the related point in the main text. In fact our friend Kartik Prabhu has done just this on his website. Here’s an example of it in his post announcing the feature.
You’ll notice that small quotation bubbles appear at various points in the text indicating marginalia. By clicking on them, the bubble turns green and the page expands to show the comment at that location. One could easily imagine CSS that allows the marginalia to actually display in the margin of the page for wider screens.
How could you imagine using fragmentions? What would you do with them? Feel free to add your thoughts below or own your site and send me a webmention.