Dana Lewis

Piecing together your priorities when your pieces keep changing

by Dana Lewis

When dealing with chronic illnesses, it sometimes feels like you have less energy or time in the day to work with than someone without chronic diseases. The “spoon theory” is a helpful analogy to illustrate this. In spoon theory, each person has a certain number of “spoons” representing their daily energy available for tasks including activities of daily living, activity or recreation activity, work, etc. For example, an average person might have 10 spoons per day, using just one spoon for daily tasks. However, someone with chronic illness may start with only 8 spoons and require 2-3 spoons for the same daily tasks, leaving them with fewer spoons for other activities.

I’ve been thinking about this differently lately. My priorities on a daily basis are mixed between activities of daily living (which includes things like eating, managing diabetes stuff like changing pump site or CGM, etc); exercise or physical activity like walking or cross-country skiing (in winter) or hiking (at other times of the year); and “work”. (“Work” for me is a mix of funded projects and my ongoing history of unfunded projects of things that move the needle, such as developing the world’s first app for exocrine pancreatic insufficiency or developing a symptom score and validating it through research or OpenAPS, to name a few.)

A raccooon juggles three spoonsAs things change in my body (I have several autoimmune diseases and have gained more over the years), my ‘budget’ on any given day has changed, and so have my priorities. During times when I feel like I’m struggling to get everything done that I want to prioritize, it sometimes feels like I don’t have enough energy to do it all, compared to other times when I’ve had sufficient energy to do the same amount of daily activities, and with extra energy left over. (Sometimes I feel like a raccoon juggling three spoons of different weights.)

In my head, I can think about how the relative amount of energy or time (these are not always identical variables) are shaped differently or take up different amounts of space in a given day, which only has 24 hours. It’s a fixed budget.

I visualize activities of daily living as the smallest amount of time, but it’s not insignificant. It’s less than the amount of time I want to spend on work/projects, and my physical activity/recreation also takes up quite a bit of space. (Note: this isn’t going to be true for everyone, but remember for me I like ultrarunning for context!)

ADLs are green, work/projects are purple, and physical activity is blue:

Example of two blocks stacked on each other (green), four blocks in an l shape (purple), three blocks in a corner shape (blue)

They almost look like Tetris pieces, don’t they? Imagine all the ways they can fit together. But we have a fixed budget, remember – only 24 hours in the day – so to me they become Tangram puzzle pieces and it’s a question every day of how I’m going to construct my day to fit everything in as best as possible.

Preferably, I want to fit EVERYTHING in. I want to use up all available time and perfectly match my energy to it. Luckily, there are a number of ways these pieces fit together. For example, check out these different variations:

8 squares with different color combinations with a double block, an l shaped block, and a corner (three pieces) block. All squares are completely full, but in different combinations/layouts of the blocks

But sometimes even this feels impossible, and I’m left feeling like I can’t quite perfectly line everything up and things are getting dropped.

Example of a square where the blocks don't all fit inside the squareIt’s important to remember that even if the total amount of time is “a lot”, it doesn’t have to be done all at once. Historically, a lot of us might work 8 hour days (or longer days). For those of us with desk jobs, we sometimes have options to split this up. For example, working a few hours and then taking a lunch break, or going for a walk / hitting the gym, then returning to work. Instead of a static 9-5, it may look like 8-11:30, 1:30-4:30, 8-9:30.

The same is true for other blocks of time, too, such as activities of daily living: they’re usually not all in one block of time, but often at least two (waking up and going to bed) plus sprinkled throughout the day.

In other words, it’s helpful to recognize that these big “blocks” can be broken down into smaller subunits:

Tangram-puzzle-pieces-different-shapes-closeup-DanaMLewis

And from there… we have a lot more possibilities for how we might fit “everything” (or our biggest priorities) into a day:

Showing full blocks filled with individual blocks, sometimes linked but in different shapes than the L and corner shapes from before.

For me, these new blocks are more common. Sometimes I have my most typical day with a solid block of exercise and work just how I’d prefer them (top left). Other times, I have less exercise and several work blocks in a day (top right). Other days, I don’t have energy for physical activity, activities of daily living take more energy or I have more tasks to do and I also don’t have quite as much time for longer work sections (bottom left). There’s also non-work days too where I prioritize getting as much activity as I can in a day (bottom right!). But in general, the point of this is that instead of thinking about the way we USED to do things or thinking we SHOULD do things a certain way, we should think about what needs to be done; the minimum of how it needs to be done; and think creatively about how we CAN accomplish these tasks, goals, and priorities.

A useful trigger phrase to check is if you find yourself saying “I should ______”. Stop and ask yourself: should, according to what/who? Is it actually a requirement? Is the requirement about exactly how you do it, or is it about the end state?

“I should work 8 hours a day” doesn’t mean (in all cases) that you have to do it 8 straight hours in a row, other than a lunch break.

If you find yourself should-ing, try changing the wording of your sentence, from “I should do X” to “I want to do X because Y”. It helps you figure out what you’re trying to do and why (Y), which may help you realize that there are more ways (X or Z or A) to achieve it, so “X” isn’t the requirement you thought it was.

If you find yourself overwhelmed because it feels like you have a big block task that you need to do, this is also helpful then to break it down into steps. Start small, as small as opening a document and writing what you need to do.

My recent favorite trick that is working well for me is putting the item of “start writing prompt for (project X)” on my to-do list. I don’t have to run the prompt; I don’t have to read the output then; I don’t have to do the next steps after that…but only start writing the prompt. It turns out that writing the prompt for an LLM helps me organize my thoughts in a way that it then makes the subsequent next steps easier and clearer, and I often then bridge into completing several of those follow up tasks! (More tips about starting that one small step here.)

The TL;DR: perhaps is that while we might yearn to fit everything in perfectly and optimize it all, it’s not going to always turn out like that. Our priorities change, our energy availability changes (due to health or kids’ schedules or other life priorities), and if we strive to be more flexible we will find more options to try to fit it all in.

Sometimes we can’t, but sometimes breaking things down can help us get closer.

Showing how the blocks on the left have fixed shapes and have certain combinations, then an arrow to the right with example blocks using the individual unit blocks rather than the fixed shapes, so the blocks look very different but are all filled, also.

What bends and what breaks and the importance of knowing the difference as a patient

by Dana Lewis

As a patient, navigating healthcare often feels like decoding a complex rulebook. There are rules for everything: medication dosages, timing protocols, follow-up intervals. Some of these rules matter a lot, for either short term or longer term safety or health outcomes. But at other times… the rules seem senseless and are applied differently based on different healthcare providers within the same specialty, let alone across different specialities. As a patient, it’s easy to initially want to try to follow all rules perfectly, but feel unable to because the rules don’t make sense in a personal context. Over time, it can be hard to resist the conclusion that the rules don’t matter or don’t apply to you. The reality is somewhere in between. And it’s the in-between part that can be a challenging balance to figure out. Learning to navigate this balance requires understanding which rules are flexible and which aren’t.

I’ve learned there’s enormous value in digging into the “why” behind medical recommendations, when I can. Take acetaminophen (Tylenol), for example. There’s a clear, non-negotiable daily limit on the bottle because exceeding it is dangerous. The over-the-counter recommendation for Extra Strength acetaminophen (500 mg tablets) is no more than two tablets every six hours, not exceeding six tablets in 24 hours. Which actually means 3 doses per day, despite the 6 hour recommendation. This maximum daily limit (no more than six tablets) is set close to the safety threshold; exceeding that limit (eight tablets in 24 hours) increases the risk of severe liver damage.

Understanding this daily limit provides flexibility within safe boundaries (with the obvious caveat that I’m not a doctor and you should always talk to your own doctor). The “every 6 hours” recommendation ensures stable bioavailability of acetaminophen throughout the day, and making sure over the course of 24 hours that you are safely and completely below the max dosage line. Slight deviations to timing, such as taking a dose at 5 hours and 30 minutes instead of precisely 6 hours because you’re about to go to sleep, do not inherently cause harm, as long as the total intake remains within the safe daily limit. This is an example where a compliance-oriented guideline is designed primarily for optimal adherence at the population based level, rather than marking an absolute safety threshold at each individual dose.

There are a lot of things like this in healthcare, but it’s not always explained to patients and patients may not always think to stop and question the why – or have the time and resources to do so – and figure it out from first principles to decide whether a deviation on the timing or amount is risky, or not.

But many healthcare rules aren’t as clearly defined by safety, as is the case of the acetaminophen example. Other rules are shaped by convenience, compliance, and practical constraints of research protocols.

Timelines like “two weeks,” “one month,” or “six months” for follow-up visits or medication titration points often reflect research convenience more than physiological necessity or even the ideal best practice. These intervals might mark study endpoints, or convenience to the healthcare system, but they don’t necessarily pinpoint the best timeline overall or the right timeline for an individual patient. It can be hard as a patient to decide if your experience is deviating from the typical timeline in a beneficial or non-optimal way, and if and when to speak up and try to better adjust to the system or adjust the system to meet your needs (such as scheduling an earlier appointment rather than waiting for a mythical 4 month follow up when it’s clear by months 2-3 that there is no benefit to a treatment because any impact should have been observed by then, even if it wasn’t significant).

As a patient, understanding when rules reflect safety versus when they’re crafted primarily for convenience is crucial, but hard. Compliance-driven rules can sometimes be thoughtfully bent. They might be able to be adjusted to better fit individual circumstances without compromising safety. For instance, a medication schedule set strictly every eight hours might be modified slightly based on daily activities or sleep patterns, provided the change remains within safe therapeutic boundaries over the course of 24 hours. (And patients should be able to discuss this with their doctors! But time availability or access may influence the ability to have these conversations up front or over time as conflicts or issues arise.)

Yet, bending rules requires confidence, critical thinking, and often significant resources, whether those are educational, emotional, health itself, or financial. It means feeling secure enough to question a provider’s advice or advocate for adjustments tailored to individual needs. It’s not always even questioning the advice itself, but checking the understanding and interpretation of how you apply it to your own life. Most providers understand that, and have no problem confirming your understanding. Other times, though, it can accidentally or unintentionally cause conflict, if providers sometimes perceive questioning of their judgement.

I’ve tripped into that situation at least once accidentally before, when I had a follow up appointment with a non-MD clinical provider who wasn’t my main doctor at the practice, who I was seeing for an acute short-term issue. She was describing a recommendation for an rx, specifically because I have diabetes. In the past, I have received over-treatment from most providers because of having type 1 diabetes, because many recommendations for non-diabetes management that have guidance for people with diabetes are based on an assumption of non-optimal healing and non-optimal glucose management. Given that at the time I was already using OpenAPS, with ideal glucose outcomes for years, and no issues ever with reduced healing, I asked if the prescription recommendation would be given to the same type of patient without diabetes. I was trying to help myself make an informed decision about whether to accept the recommendation for the rx to determine if it was appropriate. If it was just because I had diabetes, it warranted additional discussion. It wasn’t about her clinical judgement per se, but about a shared decision making process to right-size the next steps to my individual situation, rather than assume that population-based outcomes for people with diabetes were automatically appropriate. Because of my experience, I know that sometimes they are and sometimes they are not, so I’ve learned to ask these questions. However, some combination of the lack of existing relationship with this provider; perhaps a poorly worded question; and other factors made the provider act defensive. I got the information I needed, decided the rx was appropriate for me and I would use it, and went about my business. But I got a follow up call later from another MD (again, not my MD) who was defensive and calling to check why I was questioning this non-MD provider and it came across as if I was questioning her because the provider was a non-MD…which was not the issue at all! It was about me and my care and making sure I understood the root of the recommendation: whether it was because of the health situation or because I had diabetes. (It was the former, about the health situation, although initially articulated as being simply because of the latter fact of simply having diabetes.)

This situation has colored all future encounters with healthcare providers for me. Seeing new providers who I don’t have a longstanding relationship with makes me nervous, from learned, lived experience about how some of these one-off encounters have gone in the past, like the ones above.

Unfortunately, patients who push back against compliance-driven rules or simply ask questions to facilitate their understanding risk being labeled “non-compliant” or “non-adherent”, and sometimes we get labels on our chart for asking questions and being misunderstood, despite our good intentions. Such labels can have lasting impacts, influencing how future providers perceive our reliability and credibility and can cause subsequent issues for receiving or even being granted access to healthcare.

This creates a profound dilemma for patients: follow all rules precisely, without question, but potentially sacrificing optimal care, or thoughtfully question to bend them and risk being misunderstood or penalized for trying to optimize your individual outcomes when the one-size-fits-all approach doesn’t actually fit.

Breaking compliance-oriented rules isn’t about defiance. At least, it’s never been that way for me. It’s about personalization and achieving the best possible outcomes. But not every patient has the luxury of confidently navigating these nuances, and even when they do, as described above, it can still sometimes turn out not so well. Many patients don’t have the time, energy, resources, or privilege required to safely challenge or reinterpret guidelines. Or they’ve been penalized for doing so. Consequently, they may remain strictly compliant, potentially missing opportunities for better individual outcomes and higher quality of life.

Healthcare needs to provide clarity around which rules are absolute safety boundaries and which are recommendations optimized primarily for convenience or broad adherence for the safe general public use. Patients deserve transparency and support in discerning between what’s bendable for individual benefit and what’s non-negotiable for safety.

What bends, what breaks and the importance of understanding the difference in healthcare. A blog post by Dana M. Lewis from DIYPS.orgAnd: patients should not be punished for asking questions in order to better understand or check their understanding. 

Knowing the difference on what bends and what breaks matters. But many patients remain caught in the delicate balance between bending and breaking, carefully evaluating risks and rewards, often alone.

Just Do Something (Permission Granted)

by Dana Lewis

Just do it. And by it, I mean anything. You don’t need permission, but if you want permission, you have it.

If you’ve ever found yourself feeling stuck, overwhelmed (by uncertainty or the status of the world), and not sure what to do, I’ll tell you what to do.

Do something, no matter how small. Just don’t wait, go do it now.

Let’s imagine you have a grand vision for a project, but it’s something you feel like you need funding for, or partners for, or other people to work on, or any number of things that leave you feeling frozen and unable to do anything to get started. Or it’s something you want the world to have but it’s something that requires expertise to build or do, and you don’t have that expertise.

The reality is…you don’t need those things to get started.

You can get started RIGHT NOW.

The trick is to start small. As small as opening up a document and writing one sentence. But first, tell yourself, “I am not going to write an entire plan for Z”. Nope, you’re not going to do that. But what you are going to do is open the document and write down what the document is for. “This document is where I will keep notes about Plan Z”. If you have some ideas so far, write them down. Don’t make them pretty! Typos are great. You can even use voice dictation and verbalize your notes. For example “develop overall strategy, prompt an LLM for an outline of steps, write an email to person A about their interest in project Z”.

Thanks to advances in technology, you now have a helper to get started or tackle the next step, no matter how big or small. You can come back later and say “I’m not going to do all of this, but I am going to write the prompt for my LLM to create an outline of steps to develop the strategy for project Z”. That’s all you have to do: write the prompt. But you may find yourself wanting to go ahead and paste the prompt and hit run on the LLM. You don’t have to read the output yet, but it’s there for next time. Then next time, you can copy and paste the output into your doc and review it. Maybe there will be some steps you feel like taking then, or maybe you generate follow up prompts. Maybe your next step is to ask the LLM to write an email to person A about the project Z, based on the outline it generated. (Some other tips for prompting and getting started with LLMs here, if you want them.)

The beauty of starting small is that once you have something, anything, then you are making forward progress! You need progress to make a snowball, not just a snowflake in the air. Everything you do adds to the snowball. And the more you do, the easier it will get because you will have practice breaking things down into the smallest possible next step. Every time you find yourself procrastinating or saying “I can’t do thing B”, get in the habit of catching yourself and saying: 1) what could I do next? And write that down, even if you don’t do it then, and 2) ask an LLM “is it possible” or “how might I do thing B?” and break it down further and further until there’s steps you think you could take, even if you don’t take them then.

I’ve seen posts suggesting that increasingly funders (such as VCs, but I imagine it applies to other types of funders too) are going to be less likely to take projects seriously that don’t have a working prototype or an MVP or something in the works. It’s now easier than ever to build things, thanks to LLMs, and that means it’s easier for YOU to build things, too.

Yes, you. Even if you’re “not technical”, even if you “don’t know how to code”, or even if you’re “not a computer person”. Your excuses are gone. If you don’t do it, it’s because you don’t WANT to do it. Not knowing how to do it is no longer valid. Sure, maybe you don’t have time or don’t want to prioritize it – fine. But if it’s important to you to get other people involved (with funding or applications for funding or recruiting developers), then you should invest some of your time first and do something, anything, to get it started and figure out how to get things going. It doesn’t have to be perfect, it just has to be started. The more progress you make, the easier it is to share and the more people can discover your vision and jump on board with helping you move faster.

Another trigger you can watch for is finding yourself thinking or saying “I wish someone would do Y” or “I wish someone would make Z”. Stop and ask yourself “what would it take to build Y or Z?” and consider prompting an LLM to lay out what it would take. You might decide not to do it, but information is power, and you can make a more informed decision about whether this is something that’s important enough for you to prioritize doing.

And maybe you don’t have an idea for a project yet, but if you’re stewing with uncertainty these days, you can still make an impact by taking action, no matter how small. Remember, small adds up. Doing something for someone else is better than anything you could do for yourself, and I can say from experience it feels really good to make even small actions, whether it’s at the global level or down to the neighborhood level.

You probably know more what your local community needs, but to start you brainstorming, things you can do include:

  • Go sign up for a session to volunteer at a local food bank
  • Take groceries to the local food bank
  • Ask the local food bank if they have specific needs related to allergies etc, such as whether they need donations of gluten-free food for people with celiac
  • Go take books and deposit them at the free little libraries around your neighborhood
  • Sign up for a shift or get involved at a community garden
  • Paint rocks and go put them out along your local walking trails for people to discover
  • Write a social media post about your favorite charity and why you support it, and post it online or email it to your friends
  • Do a cost-effective analysis for your favorite nonprofit and share it with them (you may need some data from them first) and also post it publicly

Just-do-something-you-have-permission-DanaMLewisI’ve learned from experience that waiting rarely creates better outcomes. It only delays impact.

Progress doesn’t require permission: it requires action.

What are you waiting for? Go do something.

The Cost-Effectiveness of Life for a Child – A Deep Dive into DALY Estimates and the 2025 Funding Gap

by Dana Lewis

Life for a Child is an international non-profit organization that supports children with diabetes by providing insulin, test strips, and essential diabetes care to over 60,000 children in low-income countries who would otherwise have little to no access to treatment.

Without access to supplies and skilled medical care, children with type 1 diabetes (T1D) often die quickly, and with only intermittent access may die within a few years of diagnosis. In some countries,  limited amounts and types of older insulins may be provided by the health systems. In these ‘luckier’ countries, test strips are still not usually provided. Without regular blood glucose testing, children may survive into early adulthood, yet still experience early mortality due to long-term complications such as blindness, kidney failure, or amputations.

Life for a Child (LFAC) offers a lifeline, extending life expectancy and improving the quality of life for children at a remarkably low cost. Life for a Child also does incredibly critical work in improving care delivery infrastructures in each of these countries that they support. They work directly with local healthcare providers to co-develop critical education materials for young people living with diabetes. Further, they provide a support network to local healthcare providers and some governments. This is all to help improve sustainability of access to services, medications, and support for people with diabetes in the long run.

Scott and I have been supporting Life for a Child as our charity of choice for many years. As we wrote in our analysis here in 2017:

“Life for a Child seems like a fairly effective charity, spending about $200-$300/yr for each person they serve (thanks in part to in-kind donations from pharmaceutical firms). If we assume that providing insulin and other diabetes supplies to one individual (and hopefully keeping them alive) for 40 years is approximately the equivalent of preventing a death from malaria, that would mean that Life for a Child might be about half as effective as AMF, which is quite good compared to the far lower effectiveness of most charities, especially those that work in first world countries.”

We used some of GiveWell’s analyses to assess effective giving, especially comparing options like GiveDirectly or more specific charity options like AMF:

“​For example, the Against Malaria Foundation, the recommended charity with the most transparent and straightforward impact on people’s lives, can buy and distribute an insecticide-treated bed net for about $5.  Distributing about 600-1000 such nets results in one child living who otherwise would have died, and prevents dozens of cases of malaria.  As such, donating 10% of a typical American household’s income to AMF will save the lives of 1-2 African kids *every year*.”

(Note: In addition to donations, I also have supported Life for a  Child with my time at both the US level, serving on the US-based Life for a Child US board, as well as the US representative on the international steering committee for Life for a Child.)

However, in 2025, Life for a Child faces an immediate and unexpected $300,000 funding shortfall, due to a previously committed donor no longer being able to provide this donation. This funding was for test strips, which will reduce the number of strips provided per child from three to two test strips per day.

Further, Life for a Child has additional funding needs to continue expanding to support more children who are otherwise unsupported and going without critical supplies. (The room for funding is several orders of magnitude above this year’s funding gap.)

In order to assess the need for how we (in a general sense, speaking of all of us) fill this funding gap and understanding if this is still a cost-effective way to support people with diabetes, we wanted to revisit our analysis for how cost-effective Life For a Child is.

For background, I asked Graham Ogle, head of LFAC, for some numbers. These include:

  • Life for A Child currently supports 60,000 children in 2025
  • The original expansion plan is a goal to support 100,000 children or more by 2030
  • Estimates for how much is spent per child is about $150 USD (slightly less than what Scott and I had estimated in 2017), or $160 USD if you incorporate indirect costs.

We used these numbers below to estimate the cost-effectiveness of Life for a Child’s interventions.

Estimating Life For A Child’s Cost per Disability-Adjusted Life Year (DALY)

The Disability-Adjusted Life Year (DALY) is the most commonly used metric in global health to capture both the years of life lost (YLL) due to premature death and the years lived with disability (YLD) due to a health condition, such as type 1 diabetes.

The goal of Life for a Child’s work is to reduce both of these by providing insulin and glucose monitoring as well as improved care necessary for improved health outcomes.

  1. Life for a Child support reduces Years of Life Lost (YLL) 

To estimate YLL reduction, we calculate the difference between the expected age at death for a child with T1D who receives no care versus a child receiving LFAC support:

  • Without Life for a Child :
    • In the worst-case scenario, children with T1D may die within 1-2 years due to lack of insulin, meaning an early death by age 10 instead of the typical life expectancy of 60 years in some of these countries. . This results in 50 YLLs (60 – 10 = 50).
    • In countries where insulin is available but costly and/or glucose monitoring is not affordable and readily available, children may survive into their late 20s or 30s, but still experience significant complications, reducing life expectancy. In this scenario (minimal access to insulin, glucose monitoring, etc), we make a rough assumption that children with diabetes may survive into their mid to late 30s, therefore 25 YLLs is a reasonable estimate (60 – 35 = 25).
  • With Life for a Child :
    • Life for a Child’s program significantly improves both short-term and long-term survival. We assume that children supported by Life for a Child have the potential to live to an average life expectancy of 50-60 years (instead of dying prematurely due to untreated T1D), even when considering that LFAC only supports children into early adulthood (e.g. 25-30 years of age).

If we assume the average life expectancy for children newly diagnosed with T1D increases from 15-35 years to 50-60 years with standard Life for a Child support, that gives a savings of 25-35 YLLs (DALYs) per child, accounting for most of the uncertainty in our lifespan estimates above.

  1. Years Lived with Disability (YLD) Reduction

T1D also causes significant disability when people with T1D don’t have access to insulin and/or sufficient glucose monitoring and monitoring for early signs of complications, especially due to complications like blindness, kidney failure, and amputations. Each of these conditions brings about substantial life impairment.

  • Without Life for a Child:
    • Children with poorly supported T1D face a high likelihood of severe complications as they age. We estimate the disability weight (DW) for this scenario at 0.20, reflecting significant disability as a result of some of those complications.
  • With Life for a Child:
    • Access to insulin and glucose monitoring and healthcare monitoring drastically reduces the risk of complications. We estimate a DW of 0.05, which represents a much lower level of disability, especially in terms of future complications.

With such DWs, the reduction in YLD before premature death (20%-5%=15% over 5-30 years = 1-4 DALYs), and the 5% reduction in the YLL benefit (5% * 25-35 = 1-2 DALYs) partially cancel out, and don’t change the end result much. The net gain of 1-2 DALYs due to YLD reduction is smaller than the uncertainty range on the YLL benefit.

So for purposes of cost-effectiveness calculations, we’ll ignore YLD in the rest of this post and continue using the 25-35 DALYs per child figure.

  1. Total DALYs and Cost per DALY

For this section, we’ll assume the total impact of Life for a Child’s intervention per child from the calculations above is 25-35 DALYs.

Life for a Child’s cost per child in 2025 is approximately $150 per year (or $160 including indirect costs), and if we estimate that most children receive treatment for about 15 years, meaning the total cost per child is roughly $1,500–$2,250 over that period (or $1,600-$2,400 total with indirect costs).

Thus, the cost per DALY for Life for a Child can be estimated as:

(Cost per child) / (DALYs saved per child)

Here are a variety of estimates for varying cost levels using the lower bound of 25 DALYs saved per child supported:

  • With $1,500 per lifetime per child ($150/year for 10 years) and 25 DALYs saved, that estimates $60 per DALY ($64 with indirect costs)
  • With $2,250 per lifetime per child ($150/year for 15 years) and 25 DALYs saved, that estimates $90 per DALY ($96 with indirect costs)
  • With slightly higher costs to assume the cost will rise over time of $175/year for 15 years, this is a higher estimated $2,625 per lifetime per child and 25 DALYs saved, estimating $105 per DALY.
  • With slightly higher costs to assume the cost will rise over time of $175/year for 20 years, this is a higher estimated $3,500 per lifetime per child and 25 DALYs saved, estimating $140 per DALY.

This places Life for a Child’s cost per DALY in the range of $60–$90, for conservative estimates a remarkably cost-effective intervention, and even the higher estimates of $105-$140 assuming an increase in costs and increase in years of support compares favorably to the most effective global health programs, including those recommended by GiveWell.

How did we come to this conclusion?

  • GiveWell estimates cash transfers through GiveDirectly result in $1000/DALY, based on welfare gains rather than direct health outcomes (so apples and oranges), but even apples to oranges we can estimate Life for a Child is more cost-effective by at least single digit (eg 1-9x) factors than cash giving elsewhere.
  • We know GiveWell’s top charities are around $50-$100/DALY. Given we were estimating $60-$140 with a wide swathe of estimates, we can see that Life for a Child aligns with some of GiveWell’s top charities in terms of cost per DALY and thus “compares favorably” in our analysis. 

Why You Should Donate to Life for a Child

The point of this post was for Scott and I to reassess our statement that we have been making since ~2017 or so, which is the fact that Life for a Child is a remarkably cost-effective charity overall, and likely one of the most cost-effective charities to support people living with diabetes around the world who otherwise won’t have access (or regular access) to insulin and blood glucose testing.

Life for a Child has a DALY cost in the range of $60-$140 (reflecting current versus future cost increases), depending on which input variables you use, which makes it one of the best uses of global health funding available today.

Because of this reassessment, we also hope if you’ve read this far that you, too, will consider making a life-saving and life-changing donation for people with diabetes by donating to Life for a Child.

If you’re feeling overwhelmed with world events and want to make a tangible difference in people’s lives in a measurable way, consider donating to Life for a Child.

If you want to support people with diabetes in the most cost-effective way, so that your donation dollars make the biggest impact? Donate to Life for a Child.

Your donation saves – and changes – lives.

Life for a Child is a cost-effective charity supporting people with diabetes that needs your help. A blog post from Dana M. Lewis at DIYPS.org(Thank you).

PS – feel free to reach out to me (Dana@OpenAPS.org) and/or Scott (Scott@OpenAPS.org) if you want to chat through any of the estimates or numbers in more detail and how we consider donations.

Scale yourself

by Dana Lewis

One of the things I wish people would consider more often when thinking about AI is how they can use it to scale themselves. What are some time-consuming things that they currently have to do themselves that AI could do for them to streamline their output and increase their productivity? Productivity for giving them more time to do the things only they can do, the things they want to do, or the things they love to do. (And to help stop procrastinating on things they have to do.)

I have a habit of trying to scale myself. These days, it’s often related to EPI (exocrine pancreatic insufficiency, which some areas of the world know by the acronym PEI). I developed a strong knowledge base first from personal experience, then by doing research – including a systematic review where I read hundreds, plural, of research papers on key topics related to design protocols and guidelines. As a result of both personal and research experience, I have a lot of knowledge. It gets tapped almost daily in the EPI support groups that I’m a part of.

Whenever I notice myself answering the same question repeatedly, I make a mental note of it. Eventually, if a topic comes up often enough, I turn my response into a blog post. This way, I can provide a well-structured, comprehensive answer with more time and context than a quick comment on social media allows – and with the ability to give the same, high quality answer to multiple people (and in some cases, hundreds or thousands of people rather than the few who might see the comment buried in a response thread).

A few examples of this include:

One of my favorite things with this approach is then seeing other people begin to share the links to my longer-form content to help answer common questions. By writing things down in a shareable way, it also enables and supports other people to scale your work by sharing it easily. This has started to happen more and more with the elastase blog post, in part because there are so few resources that cover this information all in one place.

For me, I lean toward writing, but for other people that could be videos, podcast/audio recording, or other formats that can capture things you know and make them shareable, thus scaling yourself.

For me, this approach of “scaling myself” and thinking about longer form content to post online instead of re-typing similar answers over and over again isn’t unique to EPI.

I have been doing this for over a decade. I developed this pattern early after we developed and shared OpenAPS (the first open source automated insulin delivery algorithm) with the world. Early on, I found myself answering the same technical questions repeatedly in online discussions with the same answers. Typing out explanations on my phone was inefficient, and if one person had a question, others likely had the same one. Instead of repeating myself, I took the time to document answers. I would often pause, write up the information in the documentation, and share that instead. This made it easier and quicker to go find and share a link instead of retyping responses, and it also took less time, so I was willing to do it more quickly than if I had to delay what I was doing in real life in order to type out a long yet already-answered question. Over time, I had to do less one-off typing on my phone (and could save that time and energy for true, one-off unique questions) and could share links with a lot more information more easily.

How do I use AI to scale this type of work?

A lot of the above tasks are related to writing. There are different ways you can use AI for writing, without having it write something completely. You can give it notes – whether you type or voice dictate them – and have it clean up your notes, so you can focus on thinking and not about typing or fixing typos that break your flow. You can have it convert the notes into full sentences. You can ask it to write a paragraph or an article based on the notes. You can ask it to suggest wording for a particular sentence you want to clarify for your audience.

If you think about the AI as an intern and/or a partner/collaborator who you would ask to review or edit for you, you’ll likely find even more ways to integrate AI into different parts of your writing process, even if it’s not doing the full writing for you.

I have also tried to task the AI with writing for me, with mixed results. This doesn’t mean I don’t use it, but I’ve been practicing and learning where it generates usable content and where it doesn’t.

A lot of it depends on the prompt and the topic (as much as it does the output in terms of style, length, intended audience etc).

If it’s a topic that’s “known”, it can write more content that I can take and edit and transform, as opposed to when I am trying to write about a concept that is far from the current knowledge base. (I mean far for both humans and of AI – a lot of my work is bleeding edge, pushing fields towards new developments and leading humans there.) Sometimes I ask it to write something and end up using none of the content, but by saying “ugh no” my brain has jumped to saying to myself “it should really say…” and I am able to more quickly springboard into manually writing the content I was previously slow on. In other words, it can be a brainstorming tool in the opposite sense, showing me what I do not want to say on a topic! And on some of my frontier/bleeding edge topics, it reflects what is commonly ‘known’ and when what is known is now wrong (example, as always, of how it’s commonly incorrectly reported that chronic pancreatitis is the most common cause of EPI), it helps me more clearly distinguish the new content from the old, wrong, or misinformed.

(Also, it’s worth reminding you what I have to remind myself, that AI is changing constantly and new tools override what is known about what tasks do and don’t do well! For example, in between writing this and posting it, OpenAI released GPT4.5, which is reportedly better at writing-related tasks than GPT-4o and other older models. I’ll have to test it and see if that’s true and for what kinds of writing tasks!)

This isn’t the only way you can scale yourself with AI, though. Scaling yourself doesn’t have to be limited to writing and documentation style tasks. AI and other tools can help with many tasks (more examples here and here), such as:

  • Cleaning and transforming data into different formats
  • Converting a CSV file into a more readable table
  • Writing code to automate tedious data processing
  • Drafting plain-language instructions for engineers or programmers
  • Checking whether instructions or explanations are clear and understandable, and identifying any gaps in logic that you missed on your first pass

By leveraging AI and other automation tools, you can free up time and energy for higher-value work: the things you are uniquely suited to do in the world, and the things that you want or love to do. And do them more easily!

Pro tip: if you find yourself procrastinating a task, this may be a good sign that you could use AI for some of it. 

I’m trying to use noticing procrastination as a trigger for considering AI for a task.

An example of this is an upcoming post with a bunch of math and meaty cost analysis that I originally did by hand. I needed (wanted) to re-do these estimates with different numbers, but procrastinated a bit because having to carefully re-do all the estimates and replace them throughout the blog post seemed tedious, so my brain wanted to procrastinate. So, I took the blog post and dumped it in with a prompt asking it to write Jupyter Notebook code to replicate the analyses explained via the plain language post, with the ability to adjust all input variables and see the results in a table so I could compare the original and updated numbers. It took less than 1 minute to generate this code and about 5 minutes for me to copy/paste, update the numbers, run it, and evaluate the output and decide what to update in the post. Manually, this would’ve taken 30-60 minutes due to needing to check my work manually and trace it throughout the post. Instead, this automated the tedious bit and will result in this new post coming out next week rather than weeks from now (read about it here – it’s an analysis on how cost-effect Life for a Child is, a charity supporting people living with diabetes in low- and middle-income countries that can use your help to save lives.)

Scale yourself: automate more, so you can handle what matters, a blog by Dana M. Lewis from DIYPS.orgI encourage you to think about scaling yourself and identifying a task or series of tasks where you can get in the habit of leveraging these tools to do so. Like most things, the first time or two might take a little more time. But once you figure out what tasks or projects are suited for this, the time savings escalate. Just like learning how to use any new software, tool, or approach. A little bit of invested time up front will likely save you a lot of time in the future.

How Long Does It Take for Pancreatic Enzyme Replacement Therapy (PERT) to Start Working for People With Exocrine Pancreatic Insufficiency (EPI / PEI)?

by Dana Lewis

How long does it take for pancreatic enzyme replacement therapy to start working? A blog from Dana M. Lewis on DIYPS.orgIf you have been prescribed pancreatic enzyme replacement therapy (PERT), aka enzymes for exocrine pancreatic insufficiency (EPI or PEI), you may be wondering how long it will take before you start to feel better or it starts to work. This is a common question, and the answer depends on several factors, including the dosage, meal composition, and how well your body uses the enzymes. Some improvements can be seen within a single meal, while other benefits take longer to manifest. It also depends on whether you have EPI, or if you have EPI in concert with other types of gastrointestinal conditions, because some of your symptoms may be coming from other conditions.

Immediate Effects of PERT

PERT should start working with your very first meal, if your dose is in the ballpark of being ideal for you and your food intake. The enzymes help break down fats, proteins, and carbohydrates so your body can absorb nutrients more effectively. If you are taking somewhere in the ballpark of the right dose, you may notice immediate improvements in digestion, such as:

  • Less bloating or cramping after eating
  • Reduced gas
  • A decrease in diarrhea or greasy, foul-smelling stools

These improvements should occur on a per-meal basis. If you take PERT with one meal but not another, you may notice a stark difference in symptoms after each of those meals. This is a good indicator that the enzymes are working when you do take them.

Why Some People Don’t See Immediate Improvement With PERT

While PERT can provide relief after a meal or noticeable effects within a day or so, many people do not take a sufficient dose initially. Under-dosing is common, which means you may still experience symptoms as you fine-tune your enzyme intake.

Here are some reasons why you might not see immediate results:

  • Not taking enough enzymes: Many people are prescribed a starting dose well below the standard guidelines, and this may not be enough for their specific needs. This is because your body is unique, and what you eat varies from what other people eat. The combination of these two factors means that your dose is not going to be the same as someone else’s, regardless of which “category” of EPI you fall into or even with an identical fecal elastase test result. If you still experience symptoms, you may need to increase your dose of enzymes.
  • Miscalculating enzyme dosing: If you eat a small salad with a few bites of chicken, this is likely a lower fat and lower protein meal, when you compare it to a large hamburger with bacon and cheese and a side of french fries. These meals likely need different doses of enzymes. The dose you start with may work for some of your existing meals, but don’t be surprised if you have symptoms with meals with more protein or more fat than your lower quantity meals. Some people can use the same, fixed dose for all their meals…but that usually means their meals don’t vary a lot. Other people like me can have a wide range of meal quantities, so we adjust our dosing for every meal. (It gets easier over time!)
  • Enzyme timing may be wrong: PERT needs to be taken with the first few bites of a meal, and sometimes additional enzymes are needed if the meal is prolonged. It’s ok if you get halfway through a meal and haven’t taken your enzymes – start taking them then. But don’t take them well before you eat or well after. The point is to get them into your system at the same time that you are eating (or drinking any drink with fat/protein). If you have a 5 course meal at a restaurant that lasts 2 hours, you will need to take more enzymes even if your usual dose would normally cover the total quantity of what you consumed. The fact that it’s so spread out matters. Rule of thumb most people use is 20-30 minutes, so if you’re eating longer than that, you likely need another pill (or more than one more).
  • Other gastrointestinal conditions: Some people have additional digestive issues such as SIBO or other conditions like pancreatitis that have their own symptoms, and it can be challenging to tell what are EPI-specific symptoms due to enzyme dosing or timing issues as opposed to symptoms of these other conditions.

Here are some example scenarios where you might not see the improvements right away:

  • If you eat a hamburger with fries as your first meal, but your prescription is for two pills of 10,000 lipase of PERT. This is unlikely to be enough for the meal, as the standard dose for regular meals is 40-50,000 units; many people need more than that; and this type of meal is higher in fat and protein than a standard meal. Thus, symptoms.
  • If you take your PERT 30 minutes before you eat, even if the dose matches your food perfectly, the timing is off and the enzymes won’t be where they need to be to help digest your food. Thus, symptoms.

Short-Term vs. Long-Term Improvements

Short-Term (Days to Weeks)

Once you find the right PERT dosage, the most noticeable and immediate improvements should occur within your first several meals and across a few days, including:

  • Reduction in diarrhea or loose stools
  • Less bloating and discomfort after eating
  • Improved stool consistency
  • Decreased urgency to use the bathroom

If you are still experiencing symptoms after a few days of consistent PERT use, consider adjusting your dose, especially in the context of looking at what quantity is in your meal. (You’ll find some other tips here walking you through how to look at what’s in your food and how to track it, including tools like PERT Pilot for tracking it on your phone over time.)

Long-Term (Weeks to Months)

While digestion-related symptoms can improve within days, some longer-term health effects take weeks or months to resolve or notice improvements. These include:

  • Nutritional deficiencies: If you have been malabsorbing fats and nutrients for a long time, it may take months of improved digestion to correct deficiencies in fat-soluble vitamins (A, D, E, K), iron, or B12.
  • Weight stabilization: Weight gain or stabilization may occur over weeks to months. (Not everyone gains weight, but if you’re looking for weight gain to occur after you improve digestion with enzymes, it will take some time).
  • Improved energy levels: Once your body starts absorbing nutrients more efficiently, you may notice a gradual increase in energy.

Do some people see improvement on these and other symptoms sooner? Yes! However, it’s different for everyone, so don’t expect every single symptom to magically get better after your first few days on PERT.

How to Know If PERT Is Working for You

The key to determining if PERT is effective lies in tracking your symptoms and adjusting accordingly. Signs that your PERT is working include:

  • Well-formed stools without oiliness or a greasy appearance
  • Normal bowel movement frequency (not too frequent or urgent)
  • Reduction in gas, bloating, and stomach discomfort
  • Gradual improvements in weight and energy levels over time, if those were bothersome to you before

Note a key factor that does NOT tell you if PERT is working for you, which is that changes in fecal elastase score do not tell you anything about whether your enzymes are working for you. Elastase is not affected directly by your enzymes, meaning the elastase test measures human elastase (and enzymes are not human elastase, so they’re not measured by the elastase test). Elastase can naturally fluctuate a bit over time; test precision is not perfect; and for a lot of reasons it’s common to see different numbers in elastase. Read this blog post for a lot more detail, but a change from 23 to 84, or from 154 to 137, or from 58 to 101 are not meaningful changes and do not change the diagnosis of EPI. The categorization of EPI as ‘moderate’ or ‘severe’ does not matter for either diagnosis overall (EPI is EPI) and does not matter for whether or not enzymes are effective because elastase can’t answer that question.

When to Adjust or Reassess Enzyme Dosing

If you do not see some improvements within a few meals or a few days, it may indicate that your dose is too low or not properly timed or you are eating different size meals and need to pay attention to your dose size relative to what you are eating. Work with your healthcare provider to fine-tune your dosage (note that they may not be aware of the guidelines for starting doses or aware that dose ranges vary person to person), and consider tracking your meals and symptoms to identify patterns. Once you’ve ruled that out, say by tracking your meals and increasing your doses and eating consistently sized meals, you may want to investigate other conditions contributing to symptoms.

For most people, PERT should start showing effects within a single meal if the dose is in the ballpark of being correct, even if it’s not fully covering your meal. However, because under-dosing is common, it may take days or weeks of adjustments to see consistent improvement or to improve or eliminate all symptoms.

Immediate symptoms like bloating, diarrhea, and gas should improve quickly (days to weeks), while long-term nutritional recovery (if you had any nutritional deficiencies) may take longer (weeks to months).
A gif showing a square moving along a spectrum from "too little" to "too much enzyme". Too little enzyme and you have symptoms, not enough and you reduce but don't eliminate symptoms. Enough enzymes and you eliminate symptoms. Too much risks constipation.

Other posts you may find helpful:

Beware “too much” and “too little” advice in Exocrine Pancreatic Insufficiency (EPI / PEI)

by Dana Lewis

If I had a nickel every time I saw conflicting advice for people with EPI, I could buy (more) pancreatic enzyme replacement therapy. (PERT is expensive, so it’s significant that there’s so much conflicting advice).

One rule of thumb I find handy is to pause any time I see the words “too much” or “too little”.

This comes up in a lot of categories. For example, someone saying not to eat “too much” fat or fiber, and that a low-fat diet is better. The first part of the sentence should warrant a pause (red flag words – “too much”), and that should put a lot of skepticism on any advice that follows.

Specifically on the “low fat diet” – this is not true. A lot of outdated advice about EPI comes from historical research that no longer reflects modern treatment. In the past, low-fat diets were recommended because early enzyme formulations were not encapsulated or as effective, so people in the 1990s struggled to digest fat because the enzymes weren’t correctly working at the right time in their body. The “bandaid” fix was to eat less fat. Now that enzyme formulations are significantly improved (starting in the early 2000s, enzymes are now encapsulated so they get to the right place in our digestive system at the right time to work on the food we eat or drink), medical experts no longer recommend low-fat diets. Instead, people should eat a regular diet and adjust their enzyme intake accordingly to match that food intake, rather than the other way around (source: see section 4.6).

Think replacement of enzymes, rather than restriction of dietary intake: the “R” in PERT literally stands for replacement!

If you’re reading advice as a person with EPI (PEI), you need to have math in the back of your mind. (Sorry if you don’t like math, I’ll talk about some tools to help).

Any time people use words to indicate amounts of things, whether that’s amounts of enzymes or amounts of food (fat, protein, carbs, fiber), you need to think of specific numbers to go with these words.

And, you need to remember that everyone’s body is different, which means your body is different.

Turning words into math for pill count and enzymes for EPI

Enzyme intake should not be compared without considering multiple factors.

The first reason is because enzyme pills are not all the same size. Some prescription pancreatic enzyme replacement therapy (PERT) pills can be as small as 3,000 units of lipase or as large as 60,000 units of lipase. (They also contain thousands or hundreds of thousands of units of protease and amylase, to support protein and carbohydrate digestion. For this example I’ll stick to lipase, for fat digestion.)

If a person takes two enzyme pills per meal, that number alone tells us nothing. Or rather, it tells us only half of the equation!

The size of the pills matters. Someone taking two 10,000-lipase pills consumes 20,000 units per meal, while another person taking two 40,000-lipase pills is consuming 80,000 units per meal.

That is a big difference! Comparing the two total amounts of enzymes (80,000 units of lipase or 20,000 units of lipase) is a 4x difference.

And I hate to tell you this, but that’s still not the entire equation to consider. Hold on to your hat for a little more math, because…

The amount of fat consumed also matters.

Remember, enzymes are used to digest food. It’s not a magic pill where one (or two) pills will perfectly cover all food. It’s similar to insulin, where different people can need different amounts of insulin for the same amount of carbohydrates. Enzymes work the same way, where different people need different amounts of enzymes for the same amount of fat, protein, or carbohydrates.

And, people consume different amounts and types of food! Breakfast is a good example. Some people will eat cereal with milk – often that’s more carbs, a little bit of protein, and some fat. Some people will eat eggs and bacon – that’s very little carbs, a good amount of protein, and a larger amount of fat.

Let’s say you eat cereal with milk one day, and eggs and bacon the next day. Taking “two pills” might work for your cereal and milk, but not your eggs and bacon, if you’re the person with 10,000 units of lipase in your pill. However, taking “two pills” of 40,000 units of lipase might work for both meals. Or not: you may need more for the meal with higher amounts of fat and protein.

If someone eats the same quantity of fat and protein and carbs across all 3 meals, every day, they may be able to always consume the same number of pills. But for most of us, our food choices vary, and the protein and fat varies meal to meal, so it’s common to need different amounts at different meals. (If you want more details on how to figure out how much you need, given what you eat, check out this blog post with example meals and a lot more detail.)

You need to understand your baseline before making any comparisons

Everyone’s body is different, and enzyme needs vary widely depending on the amount of fat and protein consumed. What is “too much” for one person might be exactly the right amount for another, even when comparing the same exact food quantity. This variability makes it essential to understand your own baseline rather than following generic guidance. The key is finding what works for your specific needs rather than focusing on an arbitrary notion of “too much”, because “too much” needs to be compared to specific numbers that can be compared as apples to apples.

A useful analogy is heart rate. Some people have naturally higher or lower resting heart rates. If someone tells you (that’s not a doctor giving you direct medical advice) that your heart rate is too high, it’s like – what can you do about it? It’s not like you can grow your heart two sizes (like the Grinch). While fitness and activity can influence heart rate slightly, individual baseline differences remain significant. If you find yourself saying “duh, of course I’m not going to try to compare my heart rate to my spouse’s, our bodies are different”, that’s a GREAT frame of mind that you should apply to EPI, too.

(Another example is respiratory rate, where it varies person to person. If someone is having trouble breathing, the solution is not as simple as “breathe more” or “breathe less”—it depends on their normal range and underlying causes, and it takes understanding their normal range to figure out if they are breathing more or less than their normal, because their normal is what matters.)

If you have EPI, fiber (and anything else) also needs numbers

Fiber also follows this pattern. Some people caution against consuming “too much” fiber, but a baseline level is essential. “Too little” fiber can mimic EPI symptoms, leading to soft, messy stools. Finding the right amount of fiber is just as crucial as balancing fat and protein intake.

If you find yourself observing or hearing comments that you likely consume “too much” fiber – red flag check for “too much!” Similar to if you hear/see about ‘low fiber’. Low meaning what number?

You should get an estimate for how much you are consuming and contextualize it against the typical recommendations overall, evaluate whether fiber is contributing to your issues, and only then consider experimenting with it.

(For what it’s worth, you may need to adjust enzyme intake for fat/protein first before you play around with fiber, if you have EPI. Many people are given PERT prescriptions below standard guidelines, so it is common to need to increase dosing.)

For example, if you’re consuming 5 grams of fiber in a day, and the typical guidance is often for 25-30 grams (source, varies by age, gender and country so this is a ballpark)…. you are consuming less than the average person and the average recommendation.

In contrast, if you’re consuming 50+ grams of fiber? You’re consuming more than the average person/recommendation.

Understanding where you are (around the recommendation, quite a bit below, or above?) will then help you determine whether advice for ‘more’ or ‘less’ is actually appropriate in your case. Most people have no idea what you’re eating – and honestly, you may not either – so any advice for “too much”, “too little”, or “more” or “less” is completely unhelpful without these numbers in mind.

You don’t have to tell people these numbers, but you can and should know them if you want to consider evaluating whether YOU think you need more/less compared to your previous baseline.

How do you get numbers for fiber, fat, protein, and carbohydrates?

Instead of following vague “more” or “less” advice, first track your intake and outcomes.

If you don’t have a good way to estimate the amount of fat, protein, carbohydrates, and/or fiber, here’s a tool you can use – this is a Custom GPT that is designed to give you back estimates of fat, protein, carbohydrates, and fiber.

You can give it a meal, or a day’s worth of meals, or several days, and have it generate estimates for you. (It’s not perfect but it’s probably better than guessing, if you’re not familiar with estimating these macronutrients).

If you don’t like or can’t access ChatGPT (it works with free accounts, if you log in), you can also take this prompt, adjust it how you like, and give it to any free LLM tool you like (Gemini, Claude, etc.):

You are a dietitian with expertise in estimating the grams of fat, protein, carbohydrate, and fiber based on a plain language meal description. For every meal description given by the user, reply with structured text for grams of fat, protein, carbohydrates, and fiber. Your response should be four numbers and their labels. Reply only with this structure: “Fat: X; Protein: Y; Carbohydrates: Z; Fiber; A”. (Replace the X, Y, Z, and A with your estimates for these macronutrients.). If there is a decimal, round to the nearest whole number. If there are no grams of any of the macronutrients, mark them as 0 rather than nil. If the result is 0 for all four variables, please reply to the user: “I am unable to parse this meal description. Please try again.”

If you are asked by the user to then summarize a day’s worth of meals that you have estimated, you are able to do so. (Or a week’s worth). Perform the basic sum calculation needed to do this addition of each macronutrient for the time period requested, based on the estimates you provided for individual meals.

Another option is using an app like PERT Pilot. PERT Pilot is a free app for iOS for people with EPI that requires no login or user account information, and you can put in plain language descriptions of meals (“macaroni and cheese” or “spaghetti with meatballs”) and get back the estimates of fat, protein, and carbohydrates, and record how much enzymes you took so you can track your outcomes over time. (Android users – email me at Dana+PERTPilot@OpenAPS.org if you’d like to test the forthcoming Android version!) Note that PERT Pilot doesn’t estimate fiber, but if you want to start with fat/protein estimates, PERT Pilot is another way to get started with seeing what you typically consume. (For people without EPI, you can use Carb Pilot, another free iOS app that similarly gives estimates of macronutrients.)

—

Beware advice of "more" or "less" that is vague and non-numeric (not a number) unless you know your baseline numbers in exocrine pancreatic insufficiency. A blog by Dana M. Lewis from DIYPS.orgTL;DR: Instead of arbitrarily lowering or increasing fat or fiber in the diet, measure and estimate what you are consuming first. If you have EPI, assess fat digestion first by adjusting enzyme intake to minimize symptoms. (And then protein, especially for low fat / high protein meals, such as chicken or fish.) Only then consider fiber intake—some people may actually need more fiber rather than less than what they were consuming before if they experience mushy stools. Remember the importance of putting “more” or “less” into context with your own baseline numbers. Estimating current consumption is crucial because an already low-fiber diet may be contributing to the problem, and reducing fiber further could make things worse. Understanding your own baseline is the key.

You Can Create Your Own Icons (and animated gifs)

by Dana Lewis

Over the years, I’ve experimented with different tools for making visuals. Some of them are just images but in the last several years I’ve made more animations, too.

But not with any fancy design program or purpose built tool. Instead, I use PowerPoint.

Making animated gifs

I first started using PowerPoint to create gifs around 2018 or 2019. At the time, PowerPoint didn’t have a built-in option to export directly to GIF format, so I had to export animations as a movie file first and then use an online converter to turn them into a GIF. Fortunately, in recent years, PowerPoint has added a direct “Export as GIF” feature.

The process of making an animated GIF in PowerPoint is similar to adding animations or transitions in a slide deck for a presentation. I’ve used this for various projects, including:

Am I especially trained? No. Do I feel like I have design skills? No.

Elbow grease and determination to try is what I have, with the goal of trying to use visuals to convey information as a summary or to illustrate a key point to accompany written text. (I also have a tendency to want to be a perfectionist, and I have to consciously let that go and let “anything is better than nothing” guide my attempts.)

Making icons is possible, too

Beyond animations, I’ve also used PowerPoint to create icons and simple logo designs.

I ended up making the logos for Carb Pilot (a free iOS app that enables you to track the macronutrients of your choice) and PERT Pilot (a free iOS app that enables people with exocrine pancreatic insufficiency, known as EPI or PEI, to track their enzyme intake) using PowerPoint.

This, and ongoing use of LLMs to help me with coding projects like these apps, is what led me to the realization that I can now make icons, too.

I was working to add a widget to Carb Pilot, so that users can have a widget on the home screen to more quickly enter meals without having to open the app and then tap; this saves a click every time. I went from having it be a single button to having 4 buttons to simulate the Carb Pilot home screen. For the “saved meals” button, I wanted a list icon, to indicate the list of previous meals. I went to SF Symbols, Apple’s icon library, and picked out the list icon I wanted to use, and referenced it in XCode. It worked, but it lacked something.

A light purple iOS widget with four buttons - top left is blue and says AI: top right is purple with a white microphone icon; bottom left is periwinkle blue with a white plus sign icon; bottom right is bright green with a custom list icon, where instead of bullets the three items are an apple, cupcake, and banana mini-icons. It occurred to me that maybe I could tweak it somehow and make the bullets of the list represent food items. I wasn’t sure how, so I asked the LLM if it was possible. Because I’ve done my other ‘design’ work in PowerPoint, I went there and quickly dropped some shapes and lines to simulate the icon, then tested exporting – yes, you can export as SVG! I spent a few more minutes tweaking versions of it and exporting it. It turns out, yes, you can export as SVG, but then the way I designed it wasn’t really suited for SVG use. When I had dropped the SVG into XCode, it didn’t show up. I asked the LLM again and it suggested trying PNG format. I exported the icon from powerpoint as PNG, dropped it into XCode, and it worked!

(That was a good reminder that even when you use the “right” format, you may need to experiment to see what actually works in practice with whatever tools you’re using, and not let the first failure be a sign that it can’t work.)

Use What Works

There’s a theme you’ll be hearing from me: try and see what works. Just try. You don’t know if you don’t try. With LLMs and other types of AI, we have more opportunities to try new and different things that we may not have known how to do before. From coding your own apps to doing data science to designing custom icons, these are all things I didn’t know how to do before but now I can. A good approach is to experiment, try different things (and different prompts), and not be afraid to use “nontraditional” tools for projects, creative or otherwise. If it works, it works!

Facing Uncertainty with AI and Rethinking What If You Could?

by Dana Lewis

If you’re feeling overwhelmed by the rapid development of AI, you’re not alone. It’s moving fast, and for many people the uncertainty of the future (for any number of reasons) can feel scary. One reaction is to ignore it, dismiss it, or assume you don’t need it. Some people try it once, usually on something they’re already good at, and when AI doesn’t perform better than they do, they conclude it’s useless or overhyped, and possibly feel justified in going back to ignoring or rejecting it.

But that approach misses the point.

AI isn’t about replacing what you already do well. It’s about augmenting what you struggle with, unlocking new possibilities, and challenging yourself to think differently, all in the pursuit of enabling YOU to do more than you could yesterday.

One of the ways to navigate the uncertainty around AI is to shift your mindset. Instead of thinking, “That’s hard, and I can’t do that,” ask yourself, “What if I could do that? How could I do that?”

Sometimes I get a head start by asking an LLM just that: “How would I do X? Layout a plan or outline an approach to doing X.” I don’t always immediately jump to doing that thing, but I think about it, and probably 2 out of 3 times, laying out a possible approach means I do come back to that project or task and attempt it at a later time.

Even if you ultimately decide not to pursue something because of time constraints or competing priorities, at least you’ve explored it and possibly learned something even in the initial exploration about it. But, I want to point out that there’s a big difference between legitimately not being able to do something and choosing not to. Increasingly, the latter is what happens, where you may choose not to tackle a task or take on a project: this is very different from not being able to do so.

Finding the Right Use Cases for AI

Instead of testing AI on things you’re already an expert in, try applying it to areas where you’re blocked, stuck, overwhelmed, or burdened by the task. Think about a skill you’ve always wanted to learn but assumed was out of reach. Maybe you’ve never coded before, but you’re curious about writing a small script to automate a task. Maybe you’ve wanted to design a 3D-printed tool to solve a real-world problem but didn’t know where to start. AI can be a guide, an assistant, and sometimes even a collaborator in making these things possible.

For example, I once thought data science was beyond my skill set. For the longest time, I couldn’t even get Jupyter Notebooks to run! Even with expert help, I was clearly doing something silly and wrong, but it took a long time and finally LLM assistance to get step by step and deeper into sub-steps to figure out the step that was never in the documentation or instructions that I was missing – and I finally figured it out! From there, I learned enough to do a lot of the data science work on my own projects. You can see that represented in several recent projects. The same thing happened with iOS development, which I initially felt imposter syndrome about. And this year, after FOUR failed attempts (even 3 using LLMs), I finally got a working app for Android!

Each time, the challenge felt enormous. But by shifting from “I can’t” to “What if I could?” I found ways to break through. And each time AI became a more capable assistant, I revisited previous roadblocks and made even more progress, even when it was a project (like an Android version of PERT Pilot) I had previously failed at, and in that case, multiple times.

Revisiting Past Challenges

AI is evolving rapidly, and what wasn’t possible yesterday might be feasible today. Literally. (A great example is that I wrote a blog post about how medical literature seems like a game of telephone and was opining on AI-assisted tools to aid with tracking changes to the literature over time. The day I put that blog post in the queue, OpenAI announced their Deep Research tool, which I think can in part address some of the challenges I talked about currently being unsolved!)

One thing I have started to do that I recommend is keeping track of problems or projects that feel out of reach. Write them down. Revisit them every few months, and explore them with the latest LLM and AI tools. You might be surprised at how much has changed, and what is now possible.

Moving Forward with AI

You don’t even have to use AI for everything. (I don’t.) But if you’re not yet in the habit of using AI for certain types of tasks, I challenge you to find a way to use an LLM for *something* that you are working on.

A good place to insert this into your work/projects is to start noting when you find yourself saying or thinking “this is the way we/I do/did things”.

When you catch yourself thinking this, stop and ask:

  • Does it have to be done that way? Why do we think so?
  • What are we trying to achieve with this task/project?
  • Are there other ways we can achieve this?
  • If not, can we automate some or more steps of this process? Can some steps be eliminated?

You can ask yourself these questions, but you can also ask these questions to an LLM. And play around with what and how you ask (the prompt, or what you ask it, makes a difference).

One example for me has been working on a systematic review and meta analysis of a medical topic. I need to extract details about criteria I am analyzing across hundreds of papers. Oooph, big task, very slow. The LLM tools aren’t yet good about extracting non-obvious data from research papers, especially PDFs where the data I am interested may be tucked into tables, figure captions, or images themselves rather than explicitly stated as part of the results section. So for now, that still has to be manually done, but it’s on my list to revisit periodically with new LLMs.

However, I recognized that the way I was writing down (well, typing into a spreadsheet) the extracted data was burdensome and slow, and I wondered if I could make a quick simple HTML page to guide me through the extraction, with an output of the data in CSV that I could open in spreadsheet form when I’m ready to analyze. The goal is easier input of the data with the same output format (CSV for a spreadsheet). And so I used an LLM to help me quickly build that HTML page, set up a local server, and run it so I can use it for data extraction. This is one of those projects where I felt intimidated – I never quite understood spinning up servers and in fact didn’t quite understand fundamentally that for free I can “run” “a server” locally on my computer in order to do what I wanted to do. So in the process of working on a task I really understood (make an HTML page to capture data input), I was able to learn about spinning up and using local servers! Success, in terms of completing the task and learning something I can take forward into future projects.

Another smaller recent example is when I wanted to put together a simple case report for my doctor, summarizing symptoms etc, and then also adding in PDF pages of studies I was referencing so she had access to them. I knew from the past that I could copy and paste the thumbnails from Preview into the PDF, but it got challenging to be pasting 15+ pages in as thumbnails and they were inserting and breaking up previous sections, so the order of the pages was wrong and hard to fix. I decided to ask my LLM of choice if it was possible to automate compiling 4 PDF documents via a command line script, and it said yes. It told me what library to install (and I checked this is an existing tool and not a made up or malicious one first), and what command to run. I ran it, it appended the PDFs together into one file the way I wanted, and it didn’t require the tedious hand commands to copy and paste everything together and rearrange when the order was messed up.

The more I practice, the easier I find myself switching into the habit of saying “would it be possible to do X” or “Is there a way to do Y more simply/more efficiently/automate it?”. That then leads to portions which I can decide to implement, or not. But it feels a lot better to have those on hand, even if I choose not to take a project on, rather than to feel overwhelmed and out of control and uncertain about what AI can do (or not).

Facing uncertainty with AI and rethinking "What if you could?", a blog post by Dana M. Lewis on DIYPS.orgIf you can shift your mindset from fear and avoidance to curiosity and experimentation, you might discover new skills, solve problems you once thought were impossible, and open up entirely new opportunities.

So, the next time you think, “That’s too hard, I can’t do that,” stop and ask:

“What if I could?”

—

If you appreciated this post, you might like some of my other posts about AI if you haven’t read them.

How Medical Research Literature Evolves Over Time Like A Game of Telephone

by Dana Lewis

Have you ever searched for or through medical research on a specific topic, only to find different studies saying seemingly contradictory things? Or you find something that doesn’t seem to make sense?

You may experience this, whether you’re a doctor, a researcher, or a patient.

I have found it helpful to consider that medical literature is like a game of telephone, where a fact or statement is passed from one research paper to another, which means that sometimes it is slowly (or quickly!) changing along the way. Sometimes this means an error has been introduced, or replicated.

A Game of Telephone in Research Citations

Imagine a research study from 2016 that makes a statement based on the best available data at the time. Over the next few years, other papers cite that original study, repeating the statement. Some authors might slightly rephrase it, adding their own interpretations. By 2019, newer research has emerged that contradicts the original statement. Some researchers start citing this new, corrected information, while others continue citing the outdated statement because they either haven’t updated their knowledge or are relying on older sources, especially because they see other papers pointing to these older sources and find it easiest to point to them, too. It’s not necessarily made clear that this outdated statement is now known to be incorrect. Sometimes that becomes obvious in the literature and field of study, and sometimes it’s not made explicit that the prior statement is ‘incorrect’. (And if it is incorrect, it doesn’t become known as incorrect until later – at the time it’s made, it’s considered to be correct.) 

By 2022, both the correct and incorrect statements appear in the literature. Eventually, a majority of researchers transition to citing the updated, accurate information—but the outdated statement never fully disappears. A handful of papers continue to reference the original incorrect fact, whether due to oversight, habit (of using older sources and repeating citations for simple statements), or a reluctance to accept new findings.

The gif below illustrates this concept, showing how incorrect and correct statements coexist over time. It also highlights how researchers may rely on citations from previous papers without always checking whether the original information was correct in the first place.

Animated gif illustrating how citations branch off and even if new statements are introduced to the literature, the previous statement can continue to appear over time.

This is not necessarily a criticism of researchers/authors of research publications (of which I am one!), but an acknowledgement of the situation that results from these processes. Once you’ve written a paper and cited a basic fact (let’s imagine you wrote this paper in 2017 and cite the 2016 paper and fact), it’s easy to keep using this citation over time. Imagine it’s 2023 and you’re writing a paper on the same topic area, it’s very easy to drop the same citation from 2016  in for the same basic fact, and you may not think to consider updating the citation or check if the fact is still the fact.

Why This Matters

Over time, a once-accepted “fact” may be corrected or revised, but older statements can still linger in the literature, continuing to influence new research. Understanding how this process works can help you critically evaluate medical research and recognize when a widely accepted statement might actually be outdated—or even incorrect.

If you’re looking into a medical topic, it’s important to pay attention not just to what different studies say, but also when they were published and how their key claims have evolved over time. If you notice a shift in the literature—where newer papers cite a different fact than older ones—it may indicate that scientific understanding has changed.

One useful strategy is to notice how frequently a particular statement appears in the literature over time.

Whenever I have a new diagnosis or a new topic to research on one of my chronic diseases, I find myself doing this.

I go and read a lot of abstracts and research papers about the topic; I generally observe patterns in terms of key things that everyone says, which establishes what the generally understood “facts” are, and also notice what is missing. (Usually, the question I’m asking is not addressed in the literature! But that’s another topic…)

I pay attention to the dates, observing when something is said in papers in the 1990s and whether it’s still being repeated in the 2020s era papers, or if/how it’s changed. In my head, I’m updating “this is what is generally known” and “this doesn’t seem to be answered in the literature (yet)” and “this is something that has changed over time” lists.

Re-Evaluating the Original ‘Fact’

In some cases, it turns out the original statement was never correct to begin with. This can happen when early research is based on small sample sizes, incomplete data, or incorrect assumptions. Sometimes that statement was correct, in context, but taken out of context immediately and this out of context use was never corrected. 

For example, a widely cited statement in medical literature once claimed that chronic pancreatitis is the most common cause of exocrine pancreatic insufficiency (EPI). This claim was repeated across numerous papers, reinforcing it as accepted knowledge. However, a closer examination of population data shows that while chronic pancreatitis is a known co-condition of EPI, it is far less common than diabetes—a condition that affects a much larger population and is also strongly associated with EPI. Despite this, many papers still repeat the outdated claim without checking the original data behind it.

(For a deeper dive into this example, you can read my previous post here. But TL;DR: even 80% of .03% is a smaller number than 10% of 10% of the overall population…so it is not plausible that CP is the biggest cause of EPI/PEI.)

Stay Curious

This realization can be really frustrating, because if you’re trying to do primary research to help you understand a topic or question, how do you know what the truth is? This is peer-reviewed research, but what this shows us is that the process of peer-review and publishing in a journal is not infallible. There can be errors. The process for updating errors can be messy, and it can be hard to clean up the literature over time. This makes it hard for us humans – whether in the role of patient or researcher or clinician – to sort things out.

But beyond a ‘woe is me, this is hard’ moment of frustration, I do find that this perspective of literature as a process of telephone makes me a better reader of the literature and forces me to think more critically about what I’m reading, and take papers in context of the broader landscape of literature and evolving knowledge base. It helps remove the strength I would otherwise be prone to assigning any one paper (and any one ‘fact’ or finding from a single paper), and encourages me to calibrate this against the broader knowledge base and the timeline of this knowledge base.

That can also be hard to deal with personally as a researcher/author, especially someone who tends to work in the gaps, establishing new findings and facts and introducing them to the literature. Some of my work also involves correcting errors in the literature, which I find from my outsider/patient perspective to be obvious because I’ve been able to use fresh eyes and evaluate at a systematic review level/high level view, without being as much in the weeds. That means my work, to disseminate new or corrected knowledge, is even more challenging. It’s also challenging personally as a patient, when I “just” want answers and for everything to already be studied, vetted, published, and widely known by everyone (including me and my clinician team).

But it’s usually not, and that’s just something I – and we – have to deal with. I’m curious as to whether we will eventually develop tools with AI to address this. Perhaps a mini systematic review tool that scrapes the literature and includes an analysis of how things have changed over time. This is done in systematic review or narrative reviews of the literature, when you read those types of papers, but those papers are based on researcher interests (and time and funding), and I often have so many questions that don’t have systematic reviews/narrative reviews covering them. Some I turn into papers myself (such as my paper on systematically reviewing the dosing guidelines and research on pancreatic enzyme replacement therapy for people with exocrine pancreatic insufficiency, known as EPI or PEI, or a systematic review on the prevalence of EPI in the general population or a systematic review on the prevalence of EPI in people with diabetes (Type 1 and Type 2)), but sometimes it’s just a personal question and it would be great to have a tool to help facilitate the process of seeing how information has changed over time. Maybe someone will eventually build that tool, or it’ll go on my list of things I might want to build, and I’ll build it myself like I have done with other types of research tools in the past, both without and with AI assistance. We’ll see!

—

TL;DR: be cognizant of the fact that medical literature changes over time, and keep this in mind when reading a single paper. Sometimes there are competing “facts” or beliefs or statements in the literature, and sometimes you can identify how it evolves over time, so that you can better assess the accuracy of research findings and avoid relying on outdated or incorrect information.

Whether you’re a researcher, a clinician, or a patient doing research for yourself, this awareness can help you better navigate the scientific literature.

A screenshot from the animated gif showing how citation strings happen in the literature, branching off over time but often still resulting in a repetition of a fact that is later considered to be incorrect, thus both the correct and incorrect fact occur in the literature at the same time.