Watched For Patients, by Patients: Pioneering a New Approach in Med-Tech Design by  Innovate Pasadena: Friday Coffee Meetup Innovate Pasadena: Friday Coffee Meetup from YouTube

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 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?

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.

Matt Lumpkin on stage pointing at a slide on the screen stating "Restoring one's own agency is the most critical task for people working to negotiate a healthy relationship with a chronic disease."
Matt Lumpkin during his talk “For Patients, by Patients: Pioneering a New Approach in Med-Tech Design“.
Matt Lumpkin on stage with a slide displaying the text "Do the people who use the things you make feel their power returned to them?"
Another IndieWeb sentiment in a presentation on UX/UI for improving health of people dealing with type 1 diabetes.

🔖 Ethical alternatives to popular sites and apps | switching.social

Bookmarked Ethical alternatives to popular sites and apps (switching.social)

This looks interesting… Sadly a lot of their options seem to be very ActivityPub-centric, despite the fact that the site itself is run on WordPress (and they neglect to list it as an option as far as I can tell). Admittedly they do seem to be directed toward the non-technical user, but there are lots of options they’re also not listing here too. They’re also not mentioning the potential for abuse that some of these software present, particularly when they’re run by other people, or collectives of other people. While switching from Twitter to Mastodon may be a short term solution, your choice of particular instance could end you right back where you came from if you’re not careful or not running your own personal instance.

Missing from many of these lists are things like micro.blog and a plethora of IndieWeb-related projects.

With that said, it’s at least a start on overcoming some of the hurdles that exist for finding alternatives.

hat tip: Ryan Barrett

📑 Bullet Journal: One Book to Rule Them All | Jamie Todd Rubin

Annotated Bullet Journal: One Book to Rule Them All by Jamie Todd Rubin (Jamie Todd Rubin)
Isaacson pointed out that more than 7,000 pages from Da Vinci’s notebooks survived to today–a stretch of 500 years. He asked how many of our tweets and Facebook posts will survive even 50 years. Paper, it turns out, is a durable medium of information storage.  

Of course one also needs to think about reach and distribution as well. His notebooks have much more reach and distribution now than they ever did in his own lifetime. Where’s the balance? Blogging about it, syndicating to social media, and then printing paper copies in annual increments?

👓 The platform tide is turning | Nieman Journalism Lab

Read The platform tide is turning by Ben WerdmüllerBen Werdmüller (Nieman Lab)
“Instead of becoming more like technology companies or remaining beholden to platforms, publishers could help to build the internet they need.”

There are an impressive number of IndieWeb-related articles in this year’s list of Nieman Journalism Lab 2019 Predictions. Somehow I had missed the one written by our own Ben Werdmüller, or perhaps they continued publishing them after I’d seen the first batch?

👓 The year we step back from the platform | Nieman Journalism Lab | Ernie Smith

Read The year we step back from the platform by Ernie SmithErnie Smith (Nieman Lab)
"Let's replace the shadows that Twitter and Facebook and Google have been on the media with some business-model fundamentals. As 2018 has shown, they've offered us a lot more heartache than it feels like they're actually worth."

This is a very staid and sober statement about the ills of social media platforms (aka silos) and a proposed way forward for 2019. His argument is tremendously bolstered by the fact that he’s actually got his own website where he’s hosting and distributing his own content.

Ernie, should you see this, I’d welcome you to come join a rapidly growing group of creators who have been doing almost exactly what you’ve prescribed. We’re amassing a wealth of knowledge, tools, code, and examples at Indieweb.org to help you and others on their journey to better owning and controlling their online identities in almost the exact way in which you’re talking about in your article. Both individually and together we’re trying to build web websites that allow all the functionality of the platforms, but in a way that is both easy and beautiful for everyone to manage and use. Given the outlet for your piece, I’ll also mention that there’s a specific page for IndieWeb and Journalism.

I’d invite you to join the online chat and add yourself as an example to any of the appropriate pages, including perhaps for Craft. Also feel free to discuss your future plans and ask for any help or support you’d like to see for improving your own website. Together I hope we can all make your prediction for 2019 a reality.

 

Highlights, Quotes, Annotations, & Marginalia

But what if, in 2019, we take a step back and decide not to let the platform decide how to run the show?  

The IndieWeb has already made some solid strides.

January 09, 2019 at 07:55AM

I’ve been working on a redesign of my site recently, using a more robust CMS, and the advantages of controlling the structure of the platform soup-to-nuts are obvious, even if it requires more upfront work.  

January 09, 2019 at 07:57AM

2019 is the year when publishers — whether big ones like Axios or the Los Angeles Times or tiny ones like mine or Judd Legum’s Popular Information — move away from letting someone else call all the shots. Or, at least, they should.  

There’s already some work and movement in the IndieWeb with respect to journalism.

January 09, 2019 at 08:01AM

👓 Deplatforming the platforms | Richard MacManus

Read Deplatforming the platforms by Richard MacManusRichard MacManus (social.ricmac.org)
Platforms are the key to influence in the modern era. We’ve spent years being burned by them and complaining about them for either doing too much or not enough. But what if, in 2019, we take a step back and decide not to let the platform decide how to run the show? Great points by Ernie Smith in a...

👓 Tedium’s Ernie Smith: don’t rely on platforms | Indie Digital Media

Read Tedium’s Ernie Smith: don’t rely on platforms by Richard MacManus (Indie Digital Media)
My first creator profile for Indie Digital Media is especially resonant, because I’ve interviewed him before - for my previous blog ReadWriteWeb. In the more than seven years that have elapsed since that original profile, the opportunities, tools and revenue models for digital media have changed immensely. Nowadays, Ernie Smith…

🔖 Google+ Exporter

Bookmarked Get Google+ Exporter desktop app (gplus-exporter.friendsplus.me)
Export your Google+ feeds to Wordpress, Blogger and JSON. Simply choose your OS.

I haven’t tried it yet, but this is one of the first Google+ exporters I’ve seen.

hat tip:

👓 Chris Aldrich’s Year In Pocket

Read My Year in Pocket (Pocket App)
See how much I read in Pocket this year!

According to Pocket’s account I read 766,000 words or the equivalent of about 10 books. My most saved topics were current events, science, technology, health, and education.

The most popular things I apparently saved this year:

I’ll have to work at getting better to create my own end-of-year statistics since my own website has a better accounting of what I’ve actually read (it isn’t all public) and bookmarked. I do like that their service does some aggregate comparison of my data versus all the other user data (anonymized from my perspective).

Pocket also does a relatively good job of doing discovery of good things to read based on aggregate user data in terms of categories like “Best of” and “Popular”. They also give me weekly email updates of things I’ve bookmarked there as reminders to go back and read them, which I find a useful functionality which they haven’t over-gamified. Presently my own closest functionality to this is to be subscribed to the RSS feed of my own public bookmarks in a feed reader (which I find generally useful) as well as regularly checking on my private bookmarks on my websites’s back end (something as easy as clicking on a browser bookmark) and even looking at my “on this day” functionality to review over things from years past.

I’ll note that I currently rely more on Nuzzle for real-time discovery  on a daily basis however.

Greg McVerry might appreciate that they’re gamifying reading by presenting me with a badge.

As an aside while I’m thinking of it, it might be a cool thing if the IndieWeb wiki received webmentions, so that self-documentation I do on my own website automatically appeared on the appropriate linked pages either in a webmention section or perhaps the “See Also” section. If wikis did this generally, it would be a cool means of potentially building communities and fuelling discovery on the broader web. Imagine if adding to a wiki via Webmention were as easy as syndicating content to a site like IndieNews or IndieWeb.XYZ? It could also function as a useful method of archiving web content from original pages to places like the Internet Archive in a simple way, much like how I currently auto-archive my individual pages automatically on the day they’re published.

👓 Why You Should Never, Ever Use Quora | Waxy.org

Read Why You Should Never, Ever Use Quora by Andy Baio (Waxy.org)
Yesterday, Quora announced that 100 million user accounts were compromised, including private activity like downvotes and direct messages, by a “malicious third party.” Data breaches are a frustrating part of the lifecycle of every online service — as they grow in popularity, they become a big...

Amen

👓 Where’s my Net dashboard? | Jon Udell

Read Where’s my Net dashboard? by Jon UdellJon Udell (Jon Udell)
Yesterday Luann was reading a colleague’s blog and noticed a bug. When she clicked the Subscribe link, the browser loaded a page of what looked like computer code. She asked, quite reasonably: “What’s wrong? Who do I report this to?” That page of code is an RSS feed. It works the same way as...

RSS certainly has some significant user interface problems and Jon’s post certainly highlights a few of them. Lately I’ve far preferred how SubToMe helps ease some of these UI challenges. Their simple button is a great way for blogs to help pave the way to allow users to ore easily subscribe to a website via RSS.

Highlights, Quotes, Annotations, & Marginalia

It’s not just that the silos can shut down their feeds. It’s that we allowed ourselves to get herded into them in the first place.  

December 02, 2018 at 09:16PM

“Who do I report this to?”

Everyone.  

A brilliant ending!
December 02, 2018 at 09:17PM

Where’s my Net dashboard?  

Interestingly, I came to this post in my feed reader while randomly looking for something I could use as an example in something I was writing about feed readers!!!
December 02, 2018 at 09:18PM

Where’s my next dashboard? I imagine a next-gen reader that brings me the open web and my social circles in a way that helps me attend to and manage all the flow. There are apps for that, a nice example being FlowReader, which has been around since 2013. I try these things hopefully but so far none has stuck.  

I’m currently hoping that the next wave of social readers based on Microsub and which also support Micropub will be a major part of the answer.
December 02, 2018 at 09:20PM

👓 Another scenario for higher education’s future: the triumph of open | Bryan Alexander

Read Another scenario for higher education’s future: the triumph of open by Bryan Alexander (Bryan Alexander)

Let me offer another scenario for academia’s future. As is usual with the scenario forecasting methodology, this is based on extrapolating from several present-day trends – here, several trends around open.

In the past I’ve called this “The Fall of the Silos.” It’s a sign of our urban- and suburban-centric era that this rural metaphor doesn’t get a lot of traction. It’s also possible that contemporary American politics leads many to embrace silos. So I’ve renamed the scenario “The Triumph of Open.”

tl;dr version – In this future the open paradigm has succeeded in shaping the way we use and access most digital information, with powerful implications for higher education.

👓 Can We Ever Reset the Field? | Smokey Ardisson

Read Can We Ever Reset the Field? by Smokey ArdissonSmokey Ardisson (ardisson.org)
The rise of the massive corporate-run social networks—silos, where everything was stored inside and nothing left—changed distributed online social relationships. The silos replaced distributed with centralized; all of your social connections were now in one place, making it faster and “easier” to keep up with everyone. Easier in some ways, yes, but now everyone could see every aspect of you, even if you didn’t want them to. Worse, your constant software talk annoyed your bowling-league friends, and your one uncle could not stand the fact you supported the Democratic Party. All of that didn’t happen at once; it took time for these corporate social networks to consume all of your communities, to seize ownership of all of your connections and relationships, transforming something very human into mere pieces of computer data, eventually hollowing out your communities and your humanness in the process. But once it had happened, and once you realized those downsides (and others, such as abuse, Nazis, and anti-democratic propaganda), how could you escape? Was there even anywhere to escape to?

To a large extent, some of the questions and observations in this article are the things that drive me to have my own domain and have my own website. I and many others in the IndieWeb are still working on the infrastructure to support the web we’d like to have instead of the web we’re given. We’re still not there yet, and it may never be the utopia we’re hoping for, but we’ll never get there if we don’t try.​​​​​​​​​​​​​​​​​​

Highlights, Quotes, Annotations, & Marginalia

Just like in real life, where your bar trivia team doesn’t really overlap with your work softball team or your church bowling league, all of your online communities gathered in their own places, ones best suited to them, and you didn’t have to act as all facets of yourself simultaneously when trying to only interact with one.  

August 21, 2018 at 01:19PM

our brains have been trained to believe that we want, that we need, a single place where all of “our people” can gather, where it is “easy” to keep up with all of them: a massive network service, just without all the “bad stuff” of the existing ones.  

August 21, 2018 at 01:21PM

You find them in a place that you curate yourself, not one “curated” for you by a massive corporate social network intent on forcing you to be every part of yourself to everyone, all at once. You should control how, when, and where to interact with your people.  

August 21, 2018 at 01:23PM

web we lost  

https://indieweb.org/lost_infrastructure
August 21, 2018 at 01:24PM

we can’t just recreate the same thing we’re trying to escape, and we can’t expect the solution to be precisely as easy on us as the problem was.  

August 21, 2018 at 01:25PM