Please don’t shame or guilt patients (some do’s and don’ts for working with patients)

I have previously written about the cost of patient participation, reflecting on some of the asks I get to be involved in various projects, conferences, etc. Since that post, I’ve been pleased with some of the asks I’ve gotten. The good ones are good: they recognize that patient time is valuable, and proactively offer to cover not only costs of travel expenses but also a reasonable honorarium or payment for my time and expertise.

The bad ones are bad, though. In some cases, really bad. Most recently, I’ve encountered asks where it feels like they are shaming me for daring to ask if participants’ expertise is being valued by providing an honorarium for their time.

There’s a lot of social nuances around ‘asking for money’ and how we value people for their time (or not). As a PI of a grant-funded project myself, I get the tradeoffs in terms of paying people for their time to contribute vs. having that money to do other project work (speaking specifically of grant-funded projects, although the same logic applies to conference & other budgets). Personally, though, I believe the right thing to do, if you’re asking for expertise that’s not already on your team (and already being paid for), is to pay for it. You’d pay a legal expert to consult on your project if there wasn’t one on your team and you needed legal expertise. If you are having others consult or provide expertise to meet one of the goals of your project, you should pay for that, too. Otherwise, you’re asking people to do things and will be spending social cash in order to get people to do things for you. If you have a bank of relationship cash, great. But, that actually limits your ability to bring in the right (or best) experts, because it assumes you already have those relationships and they’re the best people. But thinking about filter bubbles in today’s world – chances are you do not have those relationships (yet). And if these people are experts, they should be paid for their contributions toward your project.

When some of your experts are patients and others are not, it gets even tricker. You may be able to use traditional quid pro quo relationship stuff to get someone whose “day job” it is to lend their expertise to projects like yours. But for many patients, their work isn’t their “day jobs” and they’re not getting paid. As I mentioned, they’re likely having to take vacation time or unpaid leave in order to do extracurricular things. But there are other costs, too, even in the relatively simple interaction of a patient being “asked” to do things. If you’re not a patient with a chronic condition, you may not be aware of this.

One of the ongoing struggles in being a patient with a chronic condition is not just the physical elements of the condition, and dealing with the condition itself, but also the psychosocial elements, including interacting with the world about it. Many patients are self-sufficient in managing their disease, but what about when it comes to dealing with other people who they must interface with about their needs? It’s hard. I speak from personal experience, from dealing with both type 1 diabetes and celiac. Even trying to pre-organize gluten free food at conferences, and then having to hunt down 15 humans at the conference when they “forget” and have to go see what’s gluten free…it’s a lot of work, and it’s stressful.

A friend recently shared her daughter’s experience with advocating for herself at school, based on her 504 plan. (A 504 plan is where the school and family agree up front on accommodations that the student may need, related to the medical condition. For Type 1 diabetes, that can include things like the ability to reschedule a test if the night before (or the day of), the student has exceptionally high blood sugar, because this can influence concentration and cognition, as well as making a person feel really sick.) In this instance, the daughter asked to reschedule a test and communicated her needs, but felt pressured by the teacher to take the test that day. The friend ended up having to communicate with the teacher, pointing out how her daughter did the right things, but that it’s hard for a child or teen to “stand up for themselves” to an adult – especially when meeting with resistance. This is especially true when they’re advocating for their needs based on a chronic condition.

And you know what? That’s still true even as an adult. It’s hard to always have to be different. It’s hard to have to fight 24/7/365 for your needs. Dealing with the resistance you encounter daily is *hard*. (This for me is where celiac is the more frequent pain and source of frustration. I am *so* tired of doing everything “right” in pre-requesting gluten free food due to a medical condition, and there being no gluten free food, or sub-optimal options that are not nutritious (lettuce is not a meal!).  The time and energy it takes from me to deal with this takes away from my ability to participate in an event. See this thread for an example. And it happens all the time. RAR.) Sometimes it feels easier to just come up with a workaround on your own rather than rely on other people. Or to just go with the flow, and deal with the (potentially negative) outcomes of the situation. But that’s not always possible. Either way, the drain and strain of this self-advocacy adds up, and becomes exhausting.

So, back to asking for patient participation in projects/conferences/things. Asking a patient to participate requires them to respond to you. And in many cases, it involves them having to ask for money or asking clarifying questions.  Patients often meet resistance to such requests, which is itself exhausting, especially if they get lots of asks. Based on some recent experiences, I wanted to suggest some do’s/don’ts to consider if you’re looking to ask a patient to help with something. This is by no means a comprehensive list or a “do exactly this and it’s good enough, you don’t have to think about doing the right thing anymore”. But to me, it’s a bare minimum for being able to start a conversation and to be taken seriously by patients:

DO:

  • Be specific about your ask and the time commitment involved.
    • Bonus: If you don’t have an existing relationship, be specific about why you think this person is a good fit and how you found them.
    • (Ideally this means they’re not just filling a check box for “any patient will do, we just need a patient involved.”)
  • Be upfront about what benefits and payment a patient will get.

DO NOT:

  • Shame or guilt-trip patients.
    • Yes, your project/conference/etc. is a worthwhile endeavor, and patient participation would add value.  But patients help other patients all the time. For free. And there’s a limit of how much people can do, especially when it involves taking time away from where they’ve already decided to spend their time helping people. Not to mention family time, work, etc.
  • Make a vague ask.
    • If you ask for time/expertise and do not offer payment to the person for their time or articulate any other benefits to them, you’re putting them into an awkward position: they either have to accept the ask without a clear idea of the benefit of doing so, respond back with a difficult and awkward ask for money, or say no / ignore a reasonable-seeming request.
  • Try to solely tug on the heart strings of “helping”.
    • This is shaming or guilt-tripping.
  • Confuse an honorarium with covering travel expenses to physically arrive at your event.
    • Honorarium is something that should cover time. If you offer “an honorarium to cover the flight”, that’s a travel expense reimbursement or per diem, not payment for the value of their time.
  • Ask for a coffee meeting or an introductory call based on social credibility referral from a friend/colleague, and then jump straight into “picking their expertise for free”.
    • An introductory encounter should be about getting to know each other and presenting an ask to a person. (Which hey, would save time if you did it by email and were clear per the above.) Don’t mask or skip over the ask.

Again, this is by no means of an exhaustive list (and I’d love for other patients to add their take to it). It’s not meant to blame or shame anyone, but to open what I think is a much-needed conversation about legitimizing and sustaining patient participant and engagement, because it IS valuable. I’d love fellow researchers who work with patients to share their ideas and best practices for outreaching and inviting patients to collaborate with them. We all need to talk about this to change some of the widespread behaviors that make it hard for patients to be able to participate on projects, even when we *do* want to help.

meta note: Hard conversations are hard. This blog post was hard to write and publish. It makes me feel uncomfortable in the same way I do pushing back on individual asks that don’t value my contributions.  As a patient, it’s hard to push back on “the way things are” – but I know it still needs to be done, even when it’s uncomfortable.

Vitamin D and insulin sensitivity

tl;dr – for me, Vitamin D hugely influences insulin sensitivity.

After the flu, I continued to be sick. We did the usual song and dance many people do around “hey, do you have pneumonia?”. Which, luckily, I didn’t, but I was still pretty sick and my after visit summary sheet said bronchitis. Also, my average BGs were going up, which was weird. After all, when I had the flu, I had spectacular BGs throughout. So I was pretty concerned when my time in range started dropping and my average BG started rising.

In diabetes, there are a lot of things that influence BGs. It can be a bad pump site; a bad bottle of insulin; stress; sickness; etc etc. that causes out of range BGs. Most of these are helped by having a DIY closed loop like OpenAPS. So, when your BGs start to rise above (your) normal and stay there, it’s indicative of something else going on. And because I was sick, that’s what I thought it was. But as I continued to gradually heal, I noticed something else: not only were my BG averages continuing to rise (not normal), but I also was needing a lot more insulin. Like, 20-30u more per day than usual. And that wasn’t just one day, it was 4 days of that much insulin being required. Yikes. That’s not normal, either.

So, I was thinking that I was hitting the Fiasp plateau, which made me really sad. I’ve been using Fiasp for many months now with good results. (For those of you who haven’t been tuned into the diabetes community online, while many people like Fiasp because it’s slightly faster, many people also have experienced issues with it, ranging from pump sites dying much faster than on other insulins; having issues with prolonged high BGs where “insulin acts like water”, etc.) But, I was prepared mentally to accept the plateau as the likely cause. I debated with Scott whether I should switch back to my other insulin for 2-3 sites and reservoirs to give my body a break, and try again. But I was still sick – so maybe I should wait until I was not clearing gunk out of my lungs. Or I was also pretty convinced that it was correlated with my absolute ZERO level of activity. (I had some rising BG averages briefly over Christmas where I was fearing the plateau, but turns out it was related to my inactivity, and getting more than zero steps a day resolved that.) I knew I would be moving around more the next week as I gradually felt better, so it should hopefully self-resolve. But making changes in diabetes sometimes feels like chicken and egg, with really complicated chickens and eggs – there’s a lot of variables and it’s hard to pin down a single variable that’s causing the root of the problem.

One other topic came up in our discussion – vitamin D. Scott asked me, “when was the last time you saw the sun?”. Which, because I’d been sick for weeks, and traveled for a week before that, AND because we live in Seattle and it’s winter, meant I couldn’t remember the last time I had seen the sun directly on my skin. (That sounds depressing, doesn’t it? Sheesh.)

So, I decided I would not switch back to the previous insulin I was using, and I would give it some time before I tried that, and I would focus on taking my vitamin D (because I hadn’t been taking it) and also trying to get at least SOME activity every day. I took vitamin D that night, went to bed, and….

…woke up with perfect BGs. But I didn’t hold my breath, because I was having ok nights but rough days that required the extra 30 units of insulin. But by the end of the day, I still had picture-perfect BGs (my “normal”), and I was back to using my typical average amount of insulin. PHEW. Day 2 also yielded great BG levels (for me, regardless of sickness) and around average level of insulin needed for the day time. Double phew. Day 3 is also going as expected BG and total insulin usage wise.

You might find yourself thinking, “how can it be as simple as Vitamin D? There’s probably something else going on.” I would think that – except for I have enough data to know that, when I’m vitamin D deficient, getting some vitamin D (either via pill or via natural form from sunlight) can pack a punch for insulin sensitivity. In 2014, Scott and I went out in February even when it was cold to sit in a park and get some sunshine. After about an hour of sitting and doing nothing, with no extra insulin on board, WHOOOSH. I went mega-low. I’ve had several other experiences where after being likely vitamin D deficient, and then spending an hour or so in sunlight, WHOOSH. And same for when there was no sunlight, but I took my vitamin D supplements after a while of not taking them. And no, they’re not mixed with cinnamon 😉 (That’s a diabetes joke, cinnamon does not cure diabetes. Nothing cures type 1 diabetes.)

So tl;dr – my insulin sensitivity is influenced by vitamin D, and I’ll be trying to do a better job to take my vitamin D regularly in the winters from now on!

Making changes in diabetes is hard by DanaMLewis

Women in open source make a difference

I was incredibly honored to find out that I had been nominated for the 2018 Women in Open Source award (and even more blown away to learn that I am one of the finalists). I wasn’t familiar with the award, and when I looked it up to learn more about it, the finalist list for the last few years gives me some serious imposter syndrome! Aside from that, there were a few things that caught my eye – and one of them was a citation from a study that found that only 11% of people contributing in open source are women.

To me, this number both makes sense, and doesn’t.

Why it makes sense (to me): open source can be hard on women.

I’ve been doing things in open source since 2014, falling into it because of DIYPS and because of getting to know people like Ben who are passionate open source advocates. Because I was helped by open source work, it was a key driver for my own passion behind making our work with OpenAPS open source, and is why I’m currently working on developing a series of open source tools to help researchers working with diabetes data. I don’t know that I would have done anything open source had I not found the perfect series of projects that led me there.

While there are many great people in the diabetes open source community, in the middle of 2014 I wrote this blog post about being female and being discounted. It was a hard post to write. But I felt it was important, because one of things both Scott and I noticed is a lot of the attitudes behind this seemed to be subconscious: directing technical questions about our project to Scott only; refusing to direct any substantial questions to me even after Scott specifically would redirect questions to me, etc. The only way I saw to (begin to) deal with the problem was to address it head on.

And, for me, things have improved with time. But it hasn’t gone away, and it still requires active addressing about once a month or so. And yes – these are (relatively) minor problems compared to what some women experience in open source, or in tech. But it’s some of the most common, frustrating friction that can easily drive women away when they get tired of experiencing stuff like that. And when they go away, it’s a loss for everyone.

Why this number doesn’t make sense (to me): women contribute incredible value to open source, and are high-volume contributors, especially if you look beyond the narrow definition applied to open source coding.

Every where I turn, I see women participating in open source. I see Kate Farnsworth and Christine Deltrap, two incredible individuals who have made watchfaces used by thousands of families to remote monitor their children’s blood sugars. I see Katie DiSimone, who has written hundreds of lines of documentation, and answers hundreds of technical troubleshooting questions across several channels. I see Mad Price Ball, who leads the Open Humans Foundation with open source work (*and* is an amazing mentor to women like me, who have non-traditional development backgrounds). I see Karen Sandler, a fierce advocate for making software open source, who herself is a finalist for the WOS award, too!

I also see a lot of my own contributions in open source, especially in the early days when Scott was the one doing most of the committing to Github for the tools we were building. Those were part of why I was told I was discounted in 2014, because my work didn’t “count”. Today when someone goes and looks at Github, if they look at the wrong toolkit (or just one, for example), it gets said that “Dana didn’t do anything on OpenAPS”. (Heh).

So I know there are also other women out there whose work is being overlooked when counting who’s doing open source. However, this type of work is absolutely crucial to open source projects, and these contributors drive an incredible amount of value. I’m glad the Red Hat Women in Open Source Awards site acknowledged this, and made this list:

  • Code and programming.
  • Quality assurance and bug triage.
  • Involvement in open hardware.
  • System administration and infrastructure.
  • Design, artwork, user experience, and marketing.
  • Documentation, tutorials, and other communications.
  • Translation and internationalization.
  • Open content.
  • Community advocacy and community management.
  • Intellectual property advocacy and legal reform.
  • Open source methodology.

The list was partially to help encourage people to nominate women; and also to help women to recognize all of the activities they do that’s open source. And it was helpful to me, too. Because of that list, instead of a handful of key examples of open source activity by women, I can instead name dozens of women. I bet you can, too. There’s so much incredible open source activity and value that happens in places outside of commit history, and if we want to recognize and acknowledge the work of everyone in open source communities, we should do a better job of acknowledging *all* of these types of activities and not just recognizing individuals (male or female) who have a traditional code-based commit history.

So if you’re reading this, it’s likely you’re a supporter of women in open source communities. Thank you for that! But I’d like to ask you to do two specific things.

1) Actively recognize the women working with you in open source. The internet can be a hard place to be, let alone work, when you are female. Help lift women up; recognize their work; and help them grow their skills.

2) Ok, this one is optional :) But if you’ve read all this way, you might consider clicking here and going to the Women in Open Source Awards site and voting for one the finalists in each category. It’s one vote per email address. Thanks!

Acknowledging all contributions in open source by DanaMLewis

More than 3 years of DIY closed looping with #OpenAPS

I’ve been using a DIY closed loop (OpenAPS) for 1,152 days. That’s over three years (from December 2014) of looping. That’s 1,152 nights of being able to sleep without worrying about dying in my sleep. That’s 1,152 mornings of getting to text my mom because – and when – I want to, not because it’s the thing that keeps her from worrying that I’m dead. It’s immeasurable peace of mind, in addition to the best outcomes I’ve ever had in 15 years of diabetes. And it’s gotten better since the very beginning.

Here’s where we started, and where we’ve come since then:

Here’s what hasn’t changed:

  • It is 100% do it yourself (aka, DIY). There’s no company or entity who will hand you a fully functional DIY closed loop. You get to build it yourself, which is why (among other reasons) comparing the costs of a DIY system to the cost of a potential commercial system is like apples and horseradish. But it also means you have ultimate control over your system, your algorithm, how it works, and what settings it has. There’s ultimate transparency, not just in what you’re using, but in understanding the path any feature or tool took in development from initial idea, all the way to it being a piece of code that the community is actively using. And you get to choose which pieces you use.
  • It’s driven by the spirit of paying it forward. In code and in documentation, in the interactions among the community across numerous online channels, you see incredible gratitude and appreciate sharing between members of the community. Because we can remember what it’s like to not have this technology, and we see the difference it makes. You hear stories of people succeeding at all day soccer camps or in running marathons; at school; at work; people having healthy pregnancies; and all other number of beautiful stories framed in gratitude for having technology that helps make life more about life, and less about diabetes. As Cameron said last night, “I’ve gotten use[d] to the day to day normalcy of OpenAPS, but it’s the “this is gonna be bad” and then “oh. Maybe not” that get me now. :)”

I’ve been looping for 1,152 days and I’m still blown away with appreciation for everyone in this community who codes, collaborates, documents, shares, troubleshoots, and together help us all overcome some of the many challenges in living well with diabetes. Without this community, there wouldn’t now be >500+ people worldwide accessing DIY closed loop technology. And that’s worth more to me than my own closed looping. <3

3 years of closed looping with #OpenAPS by @DanaMLewis

Quantified sickness when you have #OpenAPS and the flu

Getting “real people sick*” is the worst. And it can be terrifying when you have type 1 diabetes, and know the sickness is both likely to send your blood sugars rocketing sky high, as well as leave you exhausted and weak and that much harder to deal with a plummeting low.

*(Scott hates this term because he doesn’t like the implication that PWD’s aren’t real. We’re real, all right. But I like the phrase because it differentiates between feeling bad from blood sugar-related reasons, and the kind of sickness that anyone can get.)

In February 2014, Scott got home from a conference on Friday, and on Saturday complained about being tired with a headache. By Sunday, I started feeling weary with a sore throat. By Monday morning, I had a raging fever, chills, and the bare minimum of energy required to drag myself into the employee health clinic and get diagnosed with the flu. And since they knew I was single and lived by myself, the conversation went from “here’s your prescription for Tamiflu” to “but you can’t be by yourself, maybe we should find a bed for you in the hospital” because of how sick I was. Luckily, I called Scott and asked him to come pick me up and let me stay at his place. And there I stayed in complete misery for several days, the sickest I’d ever been. I remember at one point on the second day, waking up from a fitful doze and seeing Scott standing across the room with his laptop on a dresser, using it as a standing desk because he was so worried about me that he didn’t want to leave the room at that point. It was that bad.

Luckily, I survived. (And good thing, right, given that we went on to build OpenAPS, yes? ;)) This year’s flu experience was different. This year I was real-people sick, but without the diabetes-related fear that I’d so often experienced in the past. My blood sugars were perfectly managed by OpenAPS. I didn’t go low. It didn’t matter if I didn’t eat, or did eat (potato soup, ice cream, and frozen fruit bars were the foods of choice). My BGs stayed almost entirely in range. And because they were so in range that it was odd, I started watching the sensitivity ratio that is calculated by autosensitivity to see how my insulin sensitivity was changing over the course of the sickness. And by day 5, I finally felt good enough to share some of that data (aka, tweet). Here’s what I found from this year’s flu experience:

  • Night 1 was terrible, because I got hardly any deep sleep (45 minutes, whereas 2+h is my usual average per night) and kept waking up coughing. I also was 40% insulin resistant all night long and into Day 2, meaning it took 40% more insulin than usual to keep my BGs at target.
  • Night 2 was even worse – ZERO deep sleep. Ahhhh! It was terrible. Resistance also nudged up to 50%.
  • Night 3 – hallelujah, deep sleep returned. I ended up getting 4h53m of deep sleep, and also was able to sleep for closer to 2 hour blocks at a time, with less coughing. Also, going into night 3 was pretty much the only “high” I had of being sick – up around 180 for a few hours. Then it fell off a cliff and whooshed down to the bottom of my target, marking the drastic end of insulin resistance. After that, insulin sensitivity was fairly normal.
  • Night 4 yielded more deep sleep (>5 hours), and a tad bit of insulin sensitivity (~10%), but it’s unclear whether that’s totally sickness related or more related to the fact that I wasn’t eating much in day 3 and day 4.
  • Night 5 felt like I was going backward – 1h36m of deep sleep, tons of coughing, and interestingly a tad bit of insulin resistance (~20%) again. Night 6 (last night) I supposedly got plenty of deep sleep again (>4h), but didn’t feel like it at all due to coughing. BGs are still perfectly in range, and insulin sensitivity back to usual.

This was all done still with no-bolus, and just carb announcement when I ate whatever it was I was eating. In several cases there was negative IOB on board, but I didn’t have the usual spikes that I would normally see from that. I had 120 carbs of gluten free biscuits and gravy yesterday, and I didn’t go higher than 130mg/dl.

It’s a weird feeling to have been this sick, and have perfectly normal blood sugars. But that’s why it’s so interesting to be able to look at other data beyond average, time in range, and A1c – we now have the tools and the data to be able to dive in and really understand more about what our bodies are doing in sick situations, whether it’s norovirus or the flu.

I’m thinking if everyone shared their data from when they had the flu, or norovirus, or strep throat, or whatever – we might be able to start to analyze and detect patterns of resistance and otherwise sensitivity changes over the course of typical illness. This way, when someone gets sick with diabetes, we’d know generally “expect around XX% resistance for Days 1-3, and then expect a drop off that looks like this on Day 4”, etc.

That would be way better than the traditional ways of just bracing yourself for sky-high highs and terrible lows with no understanding or ability to make things better during illness. The peace of mind I had during the flu this year was absolutely priceless. Some people will be able to get that with DIY closed loop technology; but as with so many other things we have learned and are learning from this community, I bet we can find ways to help translate these insights to be of benefit for all people with diabetes, regardless of which therapies they have access to or decide to use.

Want to help? Been sick? Consider donating your data to my diabetes sick-day analysis project. What you should do:

  1. If you’re using a closed loop, donate your data to the OpenAPS Data Commons. You can do all your data (yay!), or just the time frame you’ve been sick. Use the “message the project owner” feature to anonymously message and share what kind of illness you had, and the dates of sickness.
  2. Not using a closed loop, but have Nightscout? Donate your data to the Nightscout Data Commons, and do the same thing: Use the “message the project owner” feature to anonymously message and share what kind of illness you had, and the dates of sickness.

As we have more people who identify batches of sick-day data, I’ll look at what insights we can find around sensitivity changes before, during, and after sickness, plus other insights we can learn from the data.

The last set of book/CGM-robot-related surprises :)

As I mentioned when I wrote about the process of writing my children’s book about diabetes devices and how all people are different – I had to keep a lot of secrets. The topic of the book was a surprise from my mom. The fact that I wrote a book at all was a secret from my brother, sister-in-law, and niece.

As I started to add other fun things, like turning the CGM-robot into a “stuffy” (which you can get on Etsy), I also wanted to do something special as a surprise for my aunt. After all, she is  the one who donated her time and her efforts for the beautiful illustrations in the book!

robot illustration @DanaMLewisI love the CGM robot so much, because it’s such a cute illustration, and it also was something that was 100% my aunt’s idea (I just asked for some kind of illustration for the opening page, and it’s totally her creation). So when I was speaking at an event and they happened to be giving out found-object robots as awards, I knew I had found my gift idea.

 

So, I almost immediately tweeted and began looking for a dead/broken CGM receiver. I had to be vague about it, though, given the topic of the book being a secret for my mom. I told the people who were reaching out with offers of busted receivers that this was for an “art project”, not hacking, so they didn’t get their hopes up about anything else!

I had reached out to the creator of the found-object robots, but she wasn’t available until January. Ouch. I knew that timeline wouldn’t work. I started thinking if maybe I could find someone local to help me create the robot. Then Scott had the idea of trying to do it with Lego’s. So on a cold, rainy, typical Seattle Friday night, off to the Lego store we went!

Let’s just say, an adult couple without kids is not the typical Lego store customer. However, I started poking around at the bins of for-sale Lego pieces, looking for pieces to help build the shapes that I wanted. The Lego store employees sidled up and said, “do you mind if we ask what you’re making?” and also began to help scout the right size and type of pieces after I showed them the illustration of the CGM robot.

And so it began to come together:

CGM robot build of legos by DanaMLewisCGM robot build of legos by DanaMLewisCGM robot build of legos by DanaMLewisWe bought a container of Lego pieces, plus some spares because why not, and brought them home. I played around with my receiver (blue) while I was waiting for the broken receiver someone had kindly donated to arrive.

CGM lego robot in blue by DanaMLewisThen the broken receiver arrived, and the robot was finished! While the Lego store will never ever tell you to glue Lego pieces, our helpful Lego store staffer passed on what other customers have told him for keeping pieces connected – a bit of super glue. So we (thanks, Scott! ;)) used super glue to attach the receiver to the back support piece and for all the major joints, so it wouldn’t fall apart in transit.

CGM lego robot in black by DanaMLewisWhen I went to see my family, taking the books and the stuffy, I also took the robot in bubble wrap, and sent it home with my mom. My mom went to take the signed copy of the book to my aunt today, and surprised her with the robot!

So, the last secret is out :).

Makers gonna make…a book about diabetes devices? Kids book written by @DanaMLewis

book inspirationLast year after Christmas, I was running around my parents’ backyard with my niece when she spotted my CGM sensor on my arm and asked what it was. I’m always struck when my niece and nephews have noticed my diabetes devices, and am interested to see what “new” humans think about and how they encounter things and what they mean. In this case, I explained the CGM and we went back to running around, but it stuck in my mind for a few days.

I also remember the excitement and attention any time a kids’ book has a character with diabetes in it, or a storyline of diabetes, because there’s just not much out there. I was diagnosed at 14, but I love seeing PWDs in the wild and like the idea of more diabetes inclusion in materials for all ages.

So, I wrote a kids book, with the goal of introducing the concept of diabetes devices and more broadly, how people are different in different ways. I talked my incredible artist aunt into illustrating this book. :)

This book is primarily for me and my niece and nephews, but I know there might be a few other people who like the idea, too (even as there may be a few people who sniff at the idea*). I investigated the publishing options and decided to go with self-publishing, which would allow for:

  • The cheapest copies for me as the author, to be able to give to my various family members who want them.
  • The ability to make it available to other people who want copies.
  • The ability to price said copies so it’s accessible and reasonable to order easily.
  • (It’s actually cheaper for you to order this on Amazon directly to your house, than it is for you to ask me for an author-priced copy and for me to go through the hoopla of getting it to ship.)
  • Every two copies purchased via Amazon yields an author-priced copy that I plan to donate to libraries, hospitals, etc. (If you’d like to sponsor 10+ books for a library system, feel free to ping me about the easiest way to do that.) I’m planning to use any “profits” from the book to pay for copies that I’m donating.

I’ve been working on it off and on for the past few months as my aunt illustrated it, and got to give a copy to my brother and niece as a total surprise to read when we were in Alabama this past weekend. So now that the cat is out of the bag, the book is available online! The book, “Carolyn’s Robot Relative” (that’s me!), is available on Amazon here (note that’s an Amazon affiliate link). (There’s also now a German-translated copy with the title, “Ist Carolyns Tante ein Roboter?” – see the German version on Amazon.de here!)

robot illustration @DanaMLewisI also *love* the robot illustration that my aunt made with the CGM as the main body of the robot.  I reached out to someone on Etsy who does custom “stuffies” – and it turns out, she has a diabetes connection, too! So, you can get a stuffed CGM robot if you or your kids like it, for $20. Here is the link to the listing on Etsy. (I don’t make any money from this; I paid $20 for my first one, but had worked with her on pricing so it would be reasonable for people to get if they liked it!)

CGM robot stuffy from Carolyn's Robot Relative by DanaMLewisCGM robot stuffy from Carolyn's Robot Relative by DanaMLewisThe stuffy with the book – it’s an awesome sized stuffy!

And because I have also been playing with code fabric on Spoonflower (see tweet thread here, or this blog post here) and know they do fabric as well as gift wrap…I uploaded the CGM robot there so I could turn it into wrapping paper, too. Here’s the link to see it on Spoonflower.

CGM robot giftwrap preview! available on Spoonflower as fabric, gift wrap/wrapping paper, or wallpaper

I learned a lot in the research process about self-publishing options and the route I took that I wanted to share here, especially for anyone who sniffs and goes troll on me about putting this out there.

*Tl;dr – self-publishing is easy, and if you don’t like my book, go make a better one yourself! :) The more books, the better!

Some background on the publishing process & how I made the book:

I chose self-publishing with CreateSpace on Amazon. They now have this new “Kindle Direct Publishing” (KDP) program that’s similar, but less tested than CreateSpace, and seems to be higher cost for author copies. I never figured out what the benefits are of that, and chose CS.

I generally Google’d a bunch of questions and ended up on the CS forums, too, and read up on different programs to use to create the book, etc.

My process:

  • I wrote the book test in Microsoft Word, then translated it into a Google spreadsheet so I could visualize the left/right layout of the flow of text, as well as start to identify where I had ideas about what images to use.
    Example_storyflow_spreadsheet_Dana_Lewis
  • My aunt began illustrating, and sending me pictures. Fun fact – all of the images in the book are put in via iPhone photos -> AirDrop -> my computer -> inserted! No fancy graphics. (Although I did open a few of the images in Preview and change the white balance, since each photo was taken in different lighting, in a weak attempt to balance the colors of the pictures side by side.)
  • I started dropping them into a Microsoft Word document. The one thing the CS forums warned about was making sure the images were high enough res. The images were…but later in the upload process, it complained about the DPI being low. I switched to Microsoft PowerPoint (doing the same thing I did in Word to create the custom page size to work with bleed, trim, etc.) and dropped the images in the same way, and PPT doesn’t compress the images and it was fine. Word was problematic. It didn’t take much time to switch back and forth, but if I did it again, I’d start with PPT because they generally seem to get that images need to be full sized.
  • (A workaround if you take screenshots and need to insert images – you can use Preview to go in and adjust the size and make it >300 DPI that CS prefers, before inserting the images into PPT).
  • I placed text boxes on top of the images.
  • Once done, I saved as a PDF, and then went to upload to CS. I uploaded and tweaked and viewed the Digital Proofreader tool about a dozen times the first day I did it, as I wanted to move text a tad up or down, and as I resolved the complaints about DPI not being great.
  • (You do the same process for the cover image, and CS is pretty good about telling you how to calculate your spine size for the number of pages in the book, and adding that in to the front/back cover size to calculate what you need. You can also get a sized template from them, and then use images and cover it up so it’s sized perfectly.)
  • Once you’re happy with what’s uploaded to the system, you submit to CS for review (takes 24 hours). You then get to review another digital proof, and a PDF version, and then get the chance to order a physical proof copy!

Tl;dr version 2 – it was actually super easy, even for someone who’s not a graphic designer, to do this. This was a great method to work with an illustrator with simple iPhone photos of awesome illustrations and turn them into a book. You could probably also scan and do all kinds of fancy stuff…but for a basic book, the basic process described above works great. It actually doesn’t take much time in terms of placing text or uploading and tweaking your file.

The hardest part was calculating the size of the pages and deciding on whether to do with bleed or without bleed.

The other hardest part was keeping the topic of the book a secret from my mom for 10 months, because I thought she’d get a bigger kick out of being surprised with the book’s topic and contents when she had a finished copy in her hands. Sorry, Mom! Hopefully you thought it’s worth it. :)

front and back of "Carolyn's Robot Relative" by @DanaMLewis

Why Open Humans is an essential part of my work to change the future of healthcare research

I’ve written about Open Humans before; both in terms of how we’re creating Data Commons there for people using Nightscout and DIY closed loops like OpenAPS to donate data for research, as well as building tools to help other researchers on the Open Humans platform. Madeleine Ball asked me to share some more about the background of the community’s work and interactions with Open Humans, along with how it will play into the Opening Pathways grant work, so here it is! This is also posted on the OpenHumans blog. Thanks, Madeleine, and Open Humans!

 

So, what do you like about Open Humans?

Health data is important to individuals, including myself, and I think it’s important that we as a society find ways to allow individuals to be able to chose when and how we share our data. Open Humans makes that very easy, and I love being able to work with the Open Humans team to create tools like the Nightscout Data Transfer uploader tool that further anonymizes data  uploads. As an individual, this makes it easy to upload my own diabetes data (continuous glucose monitoring data, insulin dosing data, food info, and other data) and share it with projects that I trust. As a researcher, and as a partner to other researchers, it makes it easy to build Data Commons projects on Open Humans to leverage data from the DIY artificial pancreas community to further healthcare research overall.

Wait, “artificial pancreas”? What’s that?

I helped build a DIY “artificial pancreas” that is really an “automated insulin delivery system”. That means a small computer & radio device that can get data from an insulin pump & continuous glucose monitor, process the data and decide what needs to be done, and send commands to adjust the insulin dosing that the insulin pump is doing. Read, write, read, rinse, repeat!

I got into this because, as a patient, I rely on my medical equipment. I want my equipment to be better, for me and everyone else. Medical equipment often isn’t perfect. “One size fits all” really doesn’t fit all. In 2013, I built a smarter alarm system for my continuous glucose monitor to make louder alarms. In 2014, with the partnership of others like Ben West who is also a passionate advocate for understanding medical devices, I “closed the loop” and built a hybrid closed loop artificial pancreas system for myself. In early 2015, we open sourced it, launching the OpenAPS movement to make this kind of technology more broadly accessible to those who wanted it.

You must be the only one who’s doing something like this

Actually, no. There are more than 400+ people worldwide using various types of DIY closed loop systems – and that’s a low estimate! It’s neat to live during a time when off the shelf hardware, existing medical devices, and open source software can be paired to improve our lives. There’s also half a dozen (or more) other DIY solutions in the diabetes community, and likely other examples (think 3D-printing prosthetics, etc.) in other types of communities, too. And there should be even more than there are – which is what I’m hoping to work on.

So what exactly is your project that’s being funded?

I created the OpenAPS Data Commons to address a few issues. First, to stop researchers from emailing and asking me for my individual data. I by no means represent all other DIY closed loopers or people with diabetes! Second, the Data Commons approach allows people to donate their data anonymously to research; since it’s anonymized, it is often IRB-exempt. It also makes this data available to people (patient researchers) who aren’t affiliated with an organization and don’t need IRB approval or anything fancy, and just need data to test new algorithm features or investigate theories.

But, not everyone implicitly knows how to do research. Many people learn research skills, but not everyone has the wherewithal and time to do so. Or maybe they don’t want to become a data science expert! For a variety of reasons, that’s why we decided to create an on-call data science and research team, that can provide support around forming research questions and working through the process of scientific discovery, as well as provide data science resources to expedite the research process. This portion of the project does focus on the diabetes community, since we have multiple Data Commons and communities of people donating data for research, as well as dozens of citizen scientists and researchers already in action (with more interested in getting involved).

What else does Open Humans have to do with it?

Since I’ve been administering the Nightscout and OpenAPS Data Commons, I’ve spent a lot of time on the Open Humans site as both a “participant” of research donating my data, as well as a “researcher” who is pulling down and using data for research (and working to get it to other researchers). I’ve been able to work closely with Madeleine and suggest the addition of a few features to make it easier to use for research and downloading large data sets from projects. I’ve also been documenting some tools I’ve created (like a complex json to csv converter; scripts to pull data from multiple OH download files and into a single file for analysis; plus writing up more details about how to work with data files coming from Nightscout into OH), also with the goal of facilitating more researchers to be able to dive in and do research without needing specific tool or technical experience.

It’s also great to work with a platform like Open Humans that allows us to share data or use data for multiple projects simultaneously. There’s no burdensome data collection or study procedures for individuals to be able to contribute to numerous research projects where their data is useful. People consent to share their data with the commons, fill out an optional survey (which will save them from having to repeat basic demographic-type information that every research project is interested in), and are done!

Are you *only* working with the diabetes community?

Not at all. The first part of our project does focus on learning best practices and lessons learned from the DIY diabetes communities, but with an eye toward creating open source toolkit and materials that will be of use to many other patient health communities. My goal is to help as many other patient health communities spark similar #WeAreNotWaiting projects in the areas that are of most use to them, based on their needs.

How can I find out more about this work?
Make sure to read our project announcement blog post if you haven’t already – it’s got some calls to action for people with diabetes; people interested in leading projects in other health communities; as well as other researchers interested in collaborating! Also, follow me on Twitter, for more posts about this work in progress!

Next generation #OpenAPS hardware work in progress – Pi HATs

tl;dr – No, you can’t order one yet, this is coming soon! Yay for new & more hardware options!

Over the years, people have had a lot of awesome ideas on how

to improve the hardware that can be used with DIY closed looping. One such example, Oskar’s work with mmeowlink, led us to later work on smaller computer boards with built-in radio stick, aka the Edison/Explorer Board rig. We started working on that last fall; they were produced and available around November, and the community has been using those widely ever since.

However, like all things, the Edison/Explorer is not without it’s downsides. One of which is – there’s no screen. You historically have needed to plug in cables, or remote login to the rig, or have connectivity via your phone, to see what it’s doing. Sometimes this is more annoying than others.

Patrick Kelly, who has a daughter with T1D and began experimenting with OpenAPS, was one of the folks who wanted a screen on the rig. He suggested the idea, which Scott and I thought was awesome – but we don’t have the expertise to build that kind of hardware. Luckily, Patrick and his dad Jack Kelly, *do* have that expertise! They began exploring some of the options around creating a rig with a screen.

(This is one of my favorite parts of the OpenAPS community, where people bring in various types of expertise and we’re all able to collaborate to make everything from hardware and software and usability improvements!)

And at the same time…the rumors became reality, and we learned that Intel has decided to discontinue the Edison module. SAD PANDA. (Intel, if you’re reading this, please bring it back! We love the Edison!) That expedited the need to find the next generation hardware. Luckily, Patrick and Jack had been progressing on the screen, focusing on incorporating it into a “HAT” (board) for the Raspberry Pi. So after discussion with others in the community about pros/cons and availability about various other computing options other than the Pi, given the widespread availability of different types of Pi’s, we’ve decided to move forward with the Pi and a HAT (board) being the most usable option for the next round of hardware that we’ll be recommending to the community.

What exactly does a Pi HAT look like?

I’m so glad you asked 😉 Here is the Pi HAT with screen on a “Pi Zero W” (which I sometimes type as “Pi0” or “Pi 0”) and a “Pi 3” (pi three), compared to the Edison/Explorer Board. My trusty Chapstick is my unit of measurement, but given some of my international friends claim to not understand that yardstick, I threw in some Euro coins on the right as another measurement stick .;)

OpenAPS_hardware_development_Oct_2017_DanaMLewis
The Pi 0 is flipped on it’s back like a turtle – but the same Pi HAT can be used for the Pi 0 and the Pi 3. The HAT is bigger than the Pi so the radio stick doesn’t get blocked.

It’s the same radio as the Edison-based Explorer block, so same expected range.

What’s the point of the screen?

With a screen, you can easily see the logs of what the loop is doing: Pi_HAT_screen_OpenAPS_example_DanaMLewis

YOU CAN EASILY ADD AN OPEN WIFI NETWORK ON THE GO! (Yea, that all caps was intentional! :)). You can also see which wifi network it is on, check for IP address, etc.

Pi HAT adding wifi exampleWe’re still working on adding to the menus and playing around with what’s possible and what’s worthwhile for displaying on the menus by default.

You can do all kinds of fun stuff – which Scott found out after asking me one day, “what else should we add to the menu?” and I promptly said “a unicorn”. Scott said, “these don’t have emoji’s, though”.

Five minutes later, we have a DIY diabetes/OpenAPS unicorn built in ASCII, because why not? 😉

Pi_HAT_screen_unicorn_closeup_DanaMLewis

Ahem. Back to technical topics.

How is this board/HAT going to be made and when is it going to be available?

Like the Edison-based Explorer, the Pi’s Explorer HAT is an open source hardware design, and ERD (who sold the Explorer for the Edison) will also be doing the Pi HAT.

Timeline is not 100% nailed down yet, but it will probably be another month or so. (Which is about a year after the Edison Explorer was first ready…crazy how time flies in the open source community!) We’ll of course, as always, shout from the rooftops when it’s ready for ordering & experimenting with. We’ll also be updating the OpenAPS docs to reflect the new gear recommended to buy, the steps for getting it up and running, troubleshooting, etc.

What about Edison/Explorer boards? Will that rig type still be supported by OpenAPS? Should I get any more of those?

Yep. Edison/EB will still be supported & widely used. There are some still left.

  • But – if you already have an Edison/EB rig – I would make your next rig purchase a HAT for one of the Pi’s.
  • If you’re new to the OpenAPS community and supply still exists, I’d still consider grabbing the parts for an Edison/Explorer rig – they’re still great, and we’ll continue to use the ones we have for a long time, and will still be supported in documentation. But you’ll likely want a HAT for a Pi rig of some sort, too, to take advantage of the screen & all the features that go with that for ease of use.

What about battery life for the Pi0/Pi3? How fast does it run? AND YOU HAVEN’T ANSWERED ALL OF MY OTHER QUESTIONS?!?!

One of the downsides of our (Scott/my) approach of getting everything to the community as fast as possible – both hardware and software – means that sometimes (every time) we share things that are works in progress. (And we are testing a whole lot of stuff on software, too.) The new hardware is no different. We don’t have all the answers yet, and we’ll hope you’ll help us figure things out as we go! Here’s some of the pending questions we have:

  • Cost. (Pi’s are cheaper than Edison’s. Explorer HATs with screens are slightly more expensive. However, we’re expecting in sum that the HAT+screen rigs with Pi of choice will likely be cheaper than an Edison/Explorer.)
  • Battery life. We know the Pi0 itself is not as efficient as the Edison, so it’ll likely require a bigger battery for the same run time. (No idea exactly how much bigger because I’m not using these rigs in the real world 100% of time yet, because…)
  • Some Pi optimizations still need to be done. (The current code works just fine on a Pi3, but the Pi0 needs some optimization work done. The Pi 0, as you can see from the picture, is smaller, and will likely be the ‘mobile’ rig for many folks, while the Pi 3 might be a backpack/home rig.)
  • Other options for “HATs” that don’t have a screen. (Eric has also been prototyping another Pi HAT, that doesn’t have a screen, and it’ll be great to test and see how that works as a potential option, too. Hop into the openaps/hardware-dev channel to chat with him if you have questions about his approach. )

As we work on the optimizations (great place to dive in if you’re looking for a place to help out!) and updating the scripts and the docs to reflect the Pi suite of options, I’ll begin carrying this kind of rig and doing my usual break-everything-in-the-real-world-and-fix-all-the-things testing approach.

I’m excited. It’s so great to have this kind of collaboration with expertise in so many areas, with everyone centered on the goal of making life with diabetes easier and safer! Shout out to the Kelly family & their colleagues for all the work on the screen & HATs; to Scott for a lot of development work on both hardware and software side; to Morgan & ERD for continuing to be a part of making great open hardware more widely available; and many other people who are working on bits and pieces to make everything possible!

January 2018 update: rigs are still evolving!

How I change pump sites

Last year, I wrote about how I “pre-soak” CGM sensors for better first-day BGs. That’s something I started doing years ago whenever possible.

Similarly, in the last few years, I’ve also changed how I change my pump sites with similar goals of improved outcomes, whenever possible.

What I used to do (i.e. for 12+ years):

  • Pull out pump site
  • Take shower
  • Put in new pump site
  • If the pump site didn’t work, spend all night high, or the next hours high while I debated whether it was just “slow” or if I needed a second new site. Ugh.

What I decided to start doing and have done ever since (unless a site gets pulled out by accident):

  • On day 3 when I decide to change my pump site, I do not take my “old” pump site out before my shower.
  • After my shower, I leave in the old pump site and put the new pump site on. Which means I am wearing TWO pump sites.
  • Put the tubing on the new site etc. as expected. But because I have the old site on, if I start to see BGs creep up, I can do one of two things:
    • 1) Swap tubing back to old site, give a bolus or a prime on the old site, then switch tubing back to new site. (I do this if I think the new site is working but “slow”)
    • 2) Swap tubing back to old site, ditch the new site, and then insert a second “new” site (or wait until the next morning to do so when I feel like it)
  •  Otherwise, if BGs are fine, I pull the “old” site out once I confirm the new site is good to go.

Is this method perfect? Nope. Does it usually help a lot when I have a new site that is kinked or otherwise a dud? Yup.

To me, it’s worth keeping the old site on for a few (or even ~12) hours. I know many people may not like the idea of “wearing two sites”. But it’s not wearing two sites for 3 days. And if you find yourself having a lot of kinked sites – that’s why and when I switched over to this approach.

YDMV, always. But hope this (post-soaking?) of pump sites, like the idea of pre-soaking CGM sensors, is helpful to someone else.