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clarkevans

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I co-created YAML in 2000 and then co-founded Prometheus Research, acquired by IQVIA in 2021. I'm now a "full time" neuropathic vasculitis patient. You could reach me via cce at clarkevans dot com.

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Finding an appropriate business model is situational and may evolve as you engage with the user community. You could start by working in public with an open source license [1]. Your initial focus is customer discovery and building a community of stakeholders willing to invest their time and accepting the adoption risk. Once you have advocates, they may have suggestions for an appropriate business model. For example, the existing non-profit may decide to apply for grants, keeping the work open source and acting as the fiscal sponsor for the project via open collective [2] supporting a paid position. In my experience, getting caught up on recapturing early investment, being concerned about secrecy / proprietary value, or being worried about a competitor are often not the best use of mental energy early on. Conversely, sharing more about your space and ideas may win you collaborators and potential customers you didn't anticipate. Alas, none of this advice may apply, the right approach is specific to a particular opportunity. Good luck & have fun.

[1] https://press.stripe.com/working-in-public [2] https://opencollective.com/become-a-host

Sid, Thank you for funding Arden Bio. Rheumatology patients and their clinicians are often left to throwing darts from afar, in series and often with significant & permanent function loss with each dart. Moreover, proper care of refractory rare diseases is not something that insurance funds: my otherwise excellent coverage expressly denies "investigatory" treatments, for example. As a small fiber neuropathic vasculitus patient with secondary Sjögren's I really look forward to progress in this field, it cannot happen soon enough. Best of luck in your own care and profile. - Clark

Heath Brothers' treatise, Switch: How to Change Things When Change Is Hard, describes three legs to facilitating a change: clear vision, sufficient motivation, and concrete first steps.

The title of this blog post hints at an important topic. However, I think even a single page summary or graphic from Switch may be more actionable. I don't love Switch's elephant analogy but it's good enough. It helped me with blind spots in my proposals.

Democracy is successful when it creates the business-regulatory environment and marketplace that let the private sector advance human welfare as well as technology.

Dissemination takes work. Materials in the right languages are needed. Finding the minimum necessary detail and visuals help. Delivery to new parents has to be done when they need the information, else they won't be receptive or remember. Then you need to get these materials into the birthing centers, to midwifes and nurses, etc. An evaluation component is also helpful to see if the approach can be improved, etc. Having this done in a repeatable way is important, every day there are new parents.

I don't see the price tag for this, but a few million dollars isn't all that much given the complexity of the dissemination challenge. It's probably a program but likely not an entire department. Curating knowledge and getting it to right people's attention at the right time is hard work. Did you see the materials they produce/disseminate?

https://safetosleep.nichd.nih.gov/resources/order

I'm not sure I understand your comment.

After birth, when new parents are sleep deprived, is a uniquely stressful time when parents are bombarded with information. Advice on the Internet is prolific and often wrong, raising anxiety without providing needed context-sensitive guidance. It looks like this program was providing trustworthy materials and outreach to reduce infant death.

I think the worse-is-better philosophy is not well encapsulated with the 4 priorities given. Perhaps it is 4 completely different priorities. Here's a strawman.

1. Minimal -- the design and implementation must be the smallest as possible, especially the scope (which should be deliberately "incomplete")

2. Timely -- the implementation must be delivered as soon as feasible, even if it comes before the design (get it working first, then figure out why)

3. Relevant -- the design and implementation must address important, unmet need, eschewing needs that are not urgent at the time (you can iterate or supplement)

4. Usable -- the implementation must be integrated with the existing, working and stable infrastructure (even if that integration causes design compromises)

The other dimensions, simplicity, correctness, consistency, and completeness are very nice to have, but they are not the primary drivers of this philosophy.

Thank you @jaboutboul. I appreciate that Linux works so well on Azure.

A substantial problem for the Linux ecosystem on Azure is that Azure Files is not POSIX compliant. With Container Apps, ephemeral storage is POSIX compliant. However, if you mount a persistent Azure Files file system and use it directly, some applications break. One workaround is to use rsync in the background to replicate data from ephemeral to Azure Files, but we can lose data this way (and ephemeral storage is limited to 8 GiB).

It'd also be nice if "Consumption Only" container apps would have more than 4GB of memory. It's so nice to use these.

Except that the one that lasts for 5 years will have 3 maintenance breakdowns during that time, where the appliance is unusable for 3-7 weeks while the service tech goes back and forth replacing components. I'd rather be stuck with the 20 old machine that has a few breakdowns but with simpler parts that could fit in the truck.

There is a business opportunity here, like Framework (with open specs), but for Induction cooktops, refrigerators, dishwashers, etc.

Tufts CTSI | Full-time | Remote, U.S. | Junior Research Software Engineer

Tufts CTSI (https://www.tuftsctsi.org/) is one of 60 NIH CTSA awardees. We are seeking a clinical data analyst / RSE to support our investigators with cohort discoveries, chart abstractions, data modeling, visualizations, and other data analysis needed for the preparation and performance of medical research grants. You would also help us grow our OHDSI (https://ohdsi.org) based research data warehouse (ETL from Epic EHR), work with RedCAP instruments, and automate operational processes. This role requires outstanding verbal and written literacy, a love of healthcare data, coupled with technical competence. We use Julia (esp. https://github.com/MechanicalRabbit/FunSQL.jl) for our database query work. This job is mostly researcher support and improving our ETLs; software we build/use is open source.

This job requires you reside in the U.S. without additional work permits. This is a junior position. This job advertisement is open but not yet posted. You could email me, hn-20240501@clarkevans.com to apply. Thank you so much.

Tufts CTSI (https://www.tuftsctsi.org/) | Project Manager | Full-Time | 100% Remote

Tufts CTSI seeks a Project Manager to help us coordinate an international Oncology Network within the OHDSI (https://ohdsi.org) community. This role includes extensive online communication, frequent documentation authoring and editing, diagramming critical dataflows, understanding of relevant health technologies, and learning the nuances of oncology research.

The Observational Health Data Sciences and Informatics (or OHDSI, pronounced "Odyssey") program is a multi-stakeholder, interdisciplinary collaborative to bring out the value of health data through large-scale analytics. All our solutions are open-source.

I cannot provide any pay details, but you're welcome to email me.

https://tuftsmedicine.wd1.myworkdayjobs.com/Jobs/job/Tufts-M...

What's fun about the Coatlicue statute, currently located in the National Museum of Anthropology in Mexico City, is that the earth deity is on the bottom. This statue is so large that one wouldn't be able to "tip" it over to look. Yet, there it is... a carving on the underside where no one can see it. Of course, the museum has a cast of the image adjacent where modern viewers can look at it. More about this kind of fun stuff is in Claudia Brittenham's book, Unseen Art: Making, Vision, and Power in Ancient Mesoamerica (disclaimer: she's my lovey wife).

I like split socks where the toe is separate. They help prevent the sock from shifting on you. These are especially lovely for use with sandals.

Since I have neuropathy, I especially like the ones with tread on the bottom, but that makes them chiral... and it always seems like my drawer has 3 left socks. Expensive ones with treads are sold by "V-Toe Socks, Inc".

This article, "Decentralization and Centralization in Sociocratic Organizations" has little to do with structureless organizations. It's quite the opposite, as it prescribes more organizational structure than is typically found in hierarchical firms. If anything, I'd call it hyper-structured, with explicit bidirectional communication channels.

> "Born in the USA" was popular because few people actually listened to the lyrics

I hear this repeated often, but is it even true?

I was a mid-western teenager when "Born in the USA" came out. My friends all knew the lyrics -- we hung out in the back of the bus, and shouted them out for 30 minutes on the ride to school. The lyrics spoke to our insecurity: fear of poverty, fear of being sent off in war, and the futility of it all. No one wanted to talk about the empty factories our bus drove past, or the parents that lost their jobs. Springsteen spoke to this, he captured our lived experience. The tune was fantastic. But it was the lyrics that clinched the deal.

That whole album was filled with singable songs: I'm on Fire, Glory Days, and especially My Hometown. The verses were especially catchy and clear as a bell, Springsteen pronounced the lyrics clearly so you hear, understand, and memorize them.

Health insurance providers have guidelines that need to be followed by doctors for almost every intervention (procedure, medication, etc.). Typically those guidelines are evidence based, that is, there must have been a study that shows the intervention was helpful for a given diagnosis. Even then, the guidelines may not reflect the studies that your doctor is using as the basis for their treatment plan. If you have a rare disease, this is problematic since there is often little evidence applicable to your treatment. Quite often patients will get a denial first, and then the doctors have a "peer to peer" where they must justify the intervention to the insurance company; often these peer to peer requests are also rejected. Finally, there is an appeal process with more extensive documentation requirements, which may take 10 days (and this is the expedited timeline). During those ten long days, the medical condition of the patient may be rapidly changing.

There is suggested legislation regarding peer-to-peer problems, namely cases where the doctor assigned by the insurance company isn't even qualified to understand the medical condition or its treatment. See https://twitter.com/OffWhiteCoat/status/1559609045027266566

I don't know the prevalence of insurance denial cases. However, from discussions with my care team, the initial treatment denial by insurance companies is "standard operating procedure". If an application for treatment doesn't check every single box in the procedure guideline, it is denied pending peer to peer, and then quite often to appeal. By the time an appeal succeeds, the treatment may no longer be relevant.

A legal challenge to Section 230 immunity, Gonzalez v. Google, involves the promotion of user content.

This analysis from 2 years ago doesn't reflect "promotion of user content" as a distinct, and potentially unprotected activity. Arguably, recommendation algorithms are neither a simple act of hosting user content (first part of Section 230), nor are they good faith moderation to remove problematic content (second part of Section 230).