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 #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?

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.

🎧 Radio Atlantic: How to Fix Social Media | The Atlantic

Listened to Radio Atlantic: How to Fix Social Media by Matt Thompson, Alexis Madrigal from The Atlantic

Social-media platforms once promised to connect the world. Today’s digital communities, though, often feel like forces for disunity. Anger and discord in 2018 seemed only amplified by the social-media institutions that now dictate our conversations. Executive Editor Matt Thompson sits down with the staff writer Alexis Madrigal to find out how we got to this state, and whether we can do anything to change it.

Discussion topics include: why our online problems are really offline ones, what these platforms have lost in pursuit of scale, and how Matt’s and Alexis’s experiments with solutions have fared.

Last year, Alexis removed retweets from his Twitter account (and was pessimistic about new changes bringing back the old Twitter). Matt just began an experiment turning his Twitter account into a place for conversation rather than performance by reclaiming “the ratio.” The effort reminds Alexis of another noble attempt at making your own rules online. Has it Made the Internet Great Again? Listen to find out.

Voices

Definitely a fascinating episode; potentially worth a second listen.

Of primary interest here, Matt Thompson discusses his concept of “Breaking the Ratio” (🎧 00:23:16-00:27:28a take on the idea of being ratioed on Twitter.

His concept immediately brings to mind a few broad ideas:

Micro.blog is, to some extent, a Twitter clone–loathe as I am to use the phrase as it is so much more than that–which acts in almost exactly the way that Matt and likely Alexis wish Twitter would. Manton Reece specifically designed Micro.blog to not have the idea of retweets or likes, which forces people to have more direct conversations and discussions. Instead of liking or retweeting a post, one must reply directly. Even if one just sends a heart or thumbs up emoji, it has to be an explicit reply. Generally replies are not so sparse however, and the interactions are much more like Matt describes in his personal community.

(I’ll be clear that micro.blog does have a “favorite” functionality, but it is private to the user and doesn’t send any notifications to the post on which it is given. As a result, the favorite functionality on micro.blog is really more semantically akin to a private bookmark, it just has a different name.)

The second thing, albeit tangential to the idea of breaking the ratio, is Ben Werdmüller‘s idea of people taking back agency and using their own voices to communicate.

While the retweet is a quick and useful shorthand, it decimates the personal voices and agency of the people who use it. He’s suggested that they might be better off restating the retweet in their own voice before sending it on, if they’re going to pass the information along. I wonder if he’s ultimately ended up somewhere interesting with his original thesis and research I know he has been doing.[1][2]

If one thinks about it for a moment the old blogosphere was completely about breaking the ratio as most writers wanted to communicate back and forth with others in a more direct and real manner. The fact that the blogosphere didn’t have likes, favorites, or retweets was a feature not an issue. The closest one usually got to a retweet was a blockquote of text which was usually highlighted, featured, and then either argued with or expounded upon.

I’ll note that I most typically use Twitter in a read-only mode almost exactly like Alexis indicates (🎧 00:29:56) that he uses it: plugged into Nuzzel to surface some of the best articles and ideas along with the ability to see the public commentary from the Tweets of the people I’m following and care about. To me this method filters out a lot of the crap and noise and tends to surface a lot more interesting content for me. I’ve created several dozen Twitter lists of various people and plugged them into Nuzzel, so invariably almost everything I come across while using it is useful and interesting to me.

Finally, I’d invite both Matt and Alexis, as fans of the old-school blogosphere, to take a look at what is happening within the IndieWeb community and the newer functionalities that have been built into it to extend what the old blogosphere is now capable of doing. My experience in having gone into it “whole hog” over the past several years has given me a lot of the experiences that Matt describes and which Alexis wishes he had (without all the additional work). I’m happy to chat with either of them or others who are looking for alternate solutions for community and conversation without a lot of the problems that come along as part and parcel with social media services.

🔖 Approaching E-Learning 3.0 | Stephen Downes

Bookmarked Approaching E-Learning 3.0 by Stephen DownesStephen Downes (downes.ca)

The course is titled 'E-Learning 3.0' and could be subtitled 'Distributed Learning Technology'. This is a course about the next generation of learning technology. It's a broad and challenging domain that I've broken down into the following topics: data, cloud, graph, community, identity, resources, recognition, experience, agency.

I'm designing the course so that each week is one of these self-contained topics. This topic can then be approached from different directions, at different levels. The content is a starting point. I will provide a series of reflections. But I will be learning about each of these topics along with everyone else.

An online course I should take part in…

👓 Invisible Labor and Digital Utopias | HackedEducation

Read Invisible Labor and Digital Utopias by Audrey WattersAudrey Watters (Hack Education)
This is the transcript of the talk I gave this afternoon at a CUNY event on "The Labor of Open"

Interesting to hear that Audrey has now also removed the Creative Commons license from her website now as well as having disabled comments and the ability to annotate using Genius and Hypothes.is. I’m all for this and happy to support her decision despite the fact that it means that it’s potentially more difficult and circuitous to share and comment on some of her excellent work. I’m sad that we’re in a place that people on the web would attack, target, and otherwise bully people into needing to take such steps, but I’m glad that there are ways, means, and tools for blocking out these bad actors. While I might have otherwise reposted and annotated her piece directly, I’ll respect her wishes and her digital sovereignty and just quote a few interesting phrases instead. This being said, you’re far better off reading the original directly anyway.

While reading this I was initially worried that it was a general rehash of some of her earlier work and thoughts which I’ve read several times in various incarnations. However, the end provided a fantastic thesis about unseen labor which should be more widely disseminated.

almost all the illustrations in this series – and there are 50 of these in all – involve “work” (or the outsourcing and obscuring of work). Let’s look at a few of these (and as we do so, think about how work is depicted – whose labor is valued, whose labor is mechanized, who works for whom, and so on.

What do machines free us from? Not drudgery – not everyone’s drudgery, at least. Not war. Not imperialism. Not gendered expectations of beauty. Not gendered expectations of heroism. Not gendered divisions of labor. Not class-based expectations of servitude. Not class-based expectations of leisure.

And so similarly, what is the digital supposed to liberate us from? What is rendered (further) invisible when we move from the mechanical to the digital, when we cannot see the levers and the wires and the pulleys.

As I look back upon the massive wealth compiled by digital social companies for what is generally a middling sort of job that they’re not paying nearly as much attention to as they ought (Facebook, Twitter, et al.) and the recent mad rush to comply with GDPR, I’m even more struck by what she’s saying here. All this value they have “created” isn’t really created by them directly, it’s done by the “invisible labor” of billions of people and then merely captured by their systems, which they’re using to actively disadvantage us in myriad ways.

I suppose a lot of it all boils down to the fact that we’re all slowly losing our humanity when we fail to exercise it and see the humanity and value in others.

The bigger problem Watters doesn’t address is that with the advent of this digital revolution, we’re sadly able to more easily and quickly marginalize, devalue, and shut out others than we were before. If we don’t wake up to our reality, our old prejudices are going to destroy us. Digital gives us the ability to scale these problems up at a staggering pace compared with the early 1900’s.

A simple and solid example can be seen in the way Facebook has been misused and abused in Sri Lanka lately. Rumors and innuendo have been able to be spread in a country unchecked by Facebook (primarily through apathy) resulting in the deaths of countless people. Facebook doesn’t even have a handle on their own scale problems to prevent these issues which are akin to allowing invading conquistadores from Spain the ability to bring guns, germs, and steel into the New World to decimate untold millions of innocent indigenous peoples. Haven’t we learned our lessons from history? Or are we so intent on bringing them into the digital domain? Cathy O’Neil and others would certainly say we’re doing exactly this with “weapons of math destruction.”

🎧 The Contrafabulists Episode 52: Annotations

Listened to The Contrafabulists Episode 52: Marginalia
In this episode, we talk about Audrey's decision to block annotations from her websites.

A great little episode that talks about annotations, but impinges on a lot of issues relating to ownership and running of a (personal) website. It discusses a lot of things that folks on the web often take for granted, but which should really be done with a lot more civility and care for others.

While I have been seeing some really great and thoughtful conversations, particularly in the last 6 months or more, as a result of people posting on their own websites and using open standards like webmentions to carry on conversations, the rest of the internet still needs to take great strides to improve itself. A lot of these issues are ones of bias, and particularly of the white male sort, but I think that the ideas encapsulated in this short podcast will help to open people’s eyes. While it’s sad that Audrey had these experiences on Twitter, I’m glad that she and Kin took the time to discuss them here in hopes of improving the space in the future for others.​​