Designing digital interactive activities that aren’t traditional icebreakers

A participant from Convening The Center recently emailed and asked what technology we had used for some of our interactive components within the phase 2 and 3 gatherings for the project. The short answer was “Google Slides” but there was a lot more that went into the choice of tech and the design of activities, so I ended up writing this blog post in case it was helpful to anyone else looking for ideas for interactive activities, new icebreakers for the digital era, etc.

Design context:

We held four small (8 people max) gatherings during “Phase 2” of CTC and one large (25 participants) gathering for “Phase 3”, and used Zoom as our videoconference platform of choice. But throughout the project, we knew we were bringing together random strangers to a meeting with no agenda (more about the project here, for background), and wanted to have ways to help people introduce themselves without relying on rote introductions that often fall back to name, title/organization (which often did not exist in this context!), or similar credentials.

We also had a few activities during the meeting where we wanted people to interact, and so the “icebreakers” (so to speak) were a low-stress way to introduce people to the types of activities we’d repeat later in the meeting.

Technology choice:

I’ve seen people use Jamboard (made by Google) for this purpose (icebreakers or introductory activities), and it was one that came to mind. However, I’ve been a participant on a Jamboard for a different type of meeting, and there are a few problems with it. There’s a limit to the number of participants; it requires participants to create the item they want to put on the board (e.g. figure out how to add a sticky note), and the examples I’ve seen content-wise ended up using it in a very binary way. That in some cases was due to the people designing the activity (more on content design, below), but given that we wanted to also use Google Slides to display information to participants and also enable notetaking in the same location, it also became easy to replicate the basic functionality in Google Slides instead. (PS – this article was helpful for comparing pros/cons of Jamboard and Google Slides.)

Content choices:

The “icebreakers” we chose served a few purposes. One, as mentioned above, was familiarizing people with the platform so we could use it for meeting-related activities. The other was the point of traditional icebreakers, which is to help everyone feel comfortable and also enable people to introduce themselves. That being said, most of the time introductions rely on credentials, and this was specifically a credential-less or non-credential-focused gathering, so we brainstormed quite a bit to think of what type of activities would allow people to get comfortable interacting with Google Slides and also introduce themselves in non-stressful ways.

The first activity we did for the small groups was a world map image and asked people to drag and drop their image to “if you could be anywhere in the world right now, where would you be?”. (I had asked all participants to send some kind of image in advance, and if they didn’t, supplied an image and told them what it was during the meeting.) I had the images lined up to the side of the map, and in this screenshot you can see the before and after from one of the groups where they dragged and dropped their images.

Visual of a world map with images representing individuals and different places they want to be in the world

The second activity was a slide where we asked everyone to type “one boring or uninteresting fact about themselves”. Again, this was a push back against traditional activities of “introduce yourself by credentials/past work” that feels performative and competitive. I had everyone’s names listed on the slide, so each could type in their fact. It ended up being a really fun discussion and we got to see people’s personalities early on! In some cases, we had people drop in images (see screenshot of example) when there was cross-cultural confusion about the name of something, such as the name of a vegetable that varies worldwide! (In this case, it was okra!)

List of people's names and a boring fact about themselves

We also did the same type of “type in” activity for “Ask me about my expertise in..” and asked people to share an expertise they have personally, or professionally. This is the closest we got to ‘traditional’ introductions but instead of being about titles and organizations it was about expertise in activities.

Finally, we did the activity most related to our meeting that I had wanted people to be comfortable with dragging and dropping their image for. We had a slide, again with everyone’s image present, and a variety of types of activities listed. We queried participants about “where do you spend most of your time now?”. Participants dragged and dropped their images accordingly. In some cases, they duplicated their image (right click, duplicate in Google Slides) to put themselves in multiple categories. We also had an “other” category listed where people could add additional core activities.

Example of slide activity where people drag their image to portray activities they're doing now and want to do in the future

Then, we had another slide asking where do they want to spend most of their time in the future? The point of this was to be able to switch back and forth between each slide and visualize the changes for group members – and also so they could see what types of activities their fellow participants might have experience in.

Some of these activities are similar to what you might do in person at meetings by “dot voting” on topics. This type of slide is a way to achieve the same type of interactivity digitally.

Facilitating or moderating these types of interactive activities

In addition to choosing and designing these activities, I also feel that moderating or facilitating these activities played a big role in the success of them for this project.

As I had mentioned in the technology choice section,  I’ve previously been a participant in other meeting-driven activities (using Jamboard or other tech) where the questions/activities were binary and unrelated to the meeting. Questions such as “are you a dog or cat person? Pick one.” or “Is a hot dog a sandwich?” are binary, and in some cases a meeting facilitator may fall into the trap of then ascribing characteristics to participants based on their response. In a meeting where you’re trying to use these activities to create a comfortable environment for participation amongst virtual strangers…that can backfire and actually cause people to shut down and limit participation in the meeting following those introductory activities.

As a result of having been on the receiving end of that experience, I really wanted to design activities with relevance to our meeting (both in terms of technology used and the content) as well as enough flexibility to support whatever level of involvement people wanted to do. That included being prepared to move people’s images or type in for them, especially if they were on the road and not able to sit stationary and use google slides. (We had recommended people be stationary for this meeting, but knew it wasn’t always possible, and were prepared to still help them verbally direct us to move their image, type in their fact, etc. This also can be very important for people with vision impairment as well, so be prepared to assist people in completing the activities for whatever reason, and also to verbally describe what is going on the slides/boards as people move things or type in their facts. This can aid those with vision impairment and also those who are on the go and can’t look at a screen during the meeting for whatever reason.)

One other reason we used Google Slides is so we’d end up with a slide for each breakout group to be able to take notes, and a “parking lot” slide at the end of the deck for people to add questions or comments they wanted to bring back up in the main group or moving forward in future discussions. Because people already had the Google Slide deck open for the activity, it was easy for them to scroll down and be in the notetaking slide for their breakout group (we colored the background of the slides, and told people they were in the purple, blue, green, etc. slides to make it easier to jump into the right slide).

One other note regarding facilitation with Zoom + Google Slides is that the chat feature in Zoom doesn’t show previous chat to people who join the Zoom meeting after that message is sent. So if you want to use Zoom chat to share the Google Slides link, have your link saved elsewhere and assign someone to copy and paste that message into the chat frequently, so all participants have access and can open the URL as they join the meeting. (This also includes if someone leaves and re-enters the meeting: you may need to re-post the link yet again into chat.)

TLDR, we used Google Slides to facilitate meeting note taking, digital “dot voting” and other interactive icebreaker activities alongside Zoom.

Update – 2021 Convening The Center!

2020 did not go exactly as planned, and that includes Convening the Center (see original announcement/plan here), which we had intended to be an awesome, in-person gathering of individuals who are new or have previous experience working to improve healthcare through advocacy, innovation, design, research, entrepreneurship, or some other category of “doing” and “fixing” problems they see for themselves and their community. But, as an early “I see COVID-19 is going to be a problem” person (see this post Scott and I posted March 7 begging people to stay home), by early February I was warning my co-PI and RWJF contacts that we would likely be postponing Convening the Center, and by May that was pretty clear. So we decided to request (and received) an extension on our grant from RWJF to enable us to push the grant into 2021…and ultimately, ::waves hand at everything still going on:: decided to shift to an all-virtual experience.

I’ll be honest – I was a little disappointed! But now, after several more months of work with John (Harlow, my Co-PI), I’m now very excited about the opportunities an all-virtual experience for Convening the Center will bring. First and foremost, although we planned to pay participants for ALL travel costs, hotel, food, AND for their time, I knew there would likely be people who would still not be able to travel to participate. I am hoping with a virtual experience (where we still pay people for their time!), the reduced time commitment to participate will enable those people to potentially participate.

Secondly, we’ve been thinking quite a bit about the design of virtual meetings and gatherings and have some ideas up our sleeve (which we’ll share as we finish developing them!) about how to achieve the goals of our gathering, online, without triggering video conference fatigue. If you’ve had any fantastic virtual experiences in 2020 (or ever), please let us know what they were, and what you loved (or what to avoid!), so that we can draw on as many inputs as possible to design this virtual experience.

Here’s what Convening the Center will now look like:

  • Starting now: recruitment. We are looking to solicit interest from individuals who are new or have some experience working to change or improve health, healthcare, communities, etc. If that’s you, please self-nominate yourself here, and/or please also consider sharing this with your communities or a friend from another community!
  • January: we will reach out to nominees with another short form to gather a bit more information to help us create the cohort.
  • Early February: we will notify selected participants.
  • February: Phase 1 (2 hours scheduled time commitment from participants, plus some asynchronous opportunities)
  • April: Phase 2 (2-4 hour schedule time commitment from participants, plus some asynchronous opportunities)
  • June: Phase 3 (2-4 hour scheduled time commitment from participants, plus some asynchronous opportunities)

We’ll be sharing more in the future about what the “phases” look like, and this virtual format will allow us to also invite participation from a broader group beyond the original cohort of participants. Stay tuned!

Again, here is the nomination link you can self-nominate or nominate others at. Thanks!

Nominate someone you know for Convening The Center!

Convening The Center

(Update: see the latest about Convening the Center in 2021 here)

Patients and care partners who want to make a difference in health care are advised to give up our day jobs, create non-profits, or change previously identified career paths to “go work for a healthcare organization.” These formal constructs are not the only ways to achieve change or make a difference.

Those who choose to work outside of traditional pathways often end up with fewer resources and fewer opportunities (not just financial, but also the opportunity of collaborations and connections).

Thinking about these gaps in resources and opportunities has been swimming around my head since the Convening we hosted as part of the Opening Pathways project (more about it here). As a project, we learned so much from the conversations we had when we were able to just bring people together.

The feedback we received from non-traditional healthcare stakeholders was one of the most surprising results of the Convening. These are people who are not necessarily working professionally in healthcare, but doing a lot of work in the nontraditional spaces. In the year since the Convening we’ve repeatedly heard how valuable it was for this group to come together, in person, to connect with others with a similar drive and passion.

Fast forward to early last year. My friend Liz Salmi (of #BTSM) reached out Alicia Staley (of #BCSM) and me to share about an exciting, random conversation and brainstorm she had with Steve Downs from Robert Wood Johnson Foundation (RWJF).  The idea: What if there was an ‘unconference’ to bring together more of these individuals–those working outside of traditional pathways–to learn and collaborate, without the agenda driven by an existing organization, association, established conference, or company?

This concept sounded great to me! It feels like a next logical step to take with Opening Pathways especially if we pair it with a few structured activities similar to what we did at the Convening to create more equitable participation opportunities for patients and care partners to help people feel comfortable engaging together in person.

When Liz said she didn’t have time to lead this project I volunteered to take it on. Liz and Alicia agreed and expressed their full support.

I put together a proposal in partnership with John Harlow who also worked on Opening Pathways, and was instrumental in designing the original Convening. We submitted a proposal to RWJF, did a few rounds of feedback and discussion about the proposal, waited a bit, and found out right around the new year that the proposal was accepted and had been awarded funding! Yay!

We’re calling this project “Convening The Center.” This both picks up on the name of the previous Convening, and emphasizes the people/patients as the center on which all of health and healthcare should be focused.

Convening The Center: What if there was a gathering for individuals working outside of traditional healthcare pathways?

What this means:

  • We have funding to put together a ~2 day meeting for ~25 individuals who are doing both the possible and the impossible to change and improve healthcare.
  • The funding includes travel (ground transportation, flights), lodging (hotel), food during the event, and an honorarium for the participants’ time.
  • The meeting was originally scheduled to be sometime in 2020 (August or September was goal; COVID-19 disrupted this planning, TBD for new dates but looking at 2021 instead).

Who will be involved:

Convening The Center project team:

  • Dana Lewis (me), Principal Investigator (PI)
  • John Harlow, Co-Principal Investigator (PI)
  • Convening Advisors: Liz Salmi, Alicia Staley, Nick Dawson

Who can participate?:

  • TBD! Here’s why and how:

Why must we convene the Center?

If you’re reading this, you likely have your own story of doing the “impossible” — you’ve faced barriers and obstacles, but have found a way to innovate, overcome, or steer around. There are a LOT of people doing this “work,” whether it’s their professional work, their personal passion, or a necessity driving them to improve things for themselves or a loved one, building and supporting their communities as unfunded labors of love. But we also know that geography, socioeconomic background, and financial resources, among other reasons, commonly leave some of these individuals siloed, or prevent them and their work from reaching its full potential.

We know there is a lack of connectedness among individual innovators, researchers, and advocates who are not employed in the traditional healthcare system. While there have been a handful of attempts to convene patient advocates to share ideas and connect with opportunities and resources, none have been devoted solely to this type of community. Existing attempts have included ad-hoc social media groups and inclusion at existing conferences and meetings. Both face serious limitations.

Social media is limited by one’s ability to stumble across a network, while conferences or meetings—which are traditionally held by legacy institutions—usually include people who are already “in” a network that invites them to such physical events, and are thus already “doing” the work, but these do not do enough to encourage new participants. Additionally, conferences and meetings prioritize the hosting organization’s agenda rather than facilitating the development of non-traditional innovators. Given the limitations of social media and existing conferences, the status quo leads new “doers” to (unknowingly and repeatedly) duplicate the work of others and fail to effectively share knowledge and scale tools that could help others. Overall, there are not a lot of resources for people who do this outside of a professional job.

Therefore, we aim to do something different to identify participants for this meeting.

Rather than just invite the same individuals who have the resources to participate, or have already succeeded somewhat, even in the face of all the existing barriers, we plan to solicit attendees from a mix of health communities, from a range of experiences, with diverse demographics, including those who are newly working in this space, as well as experienced individuals with established credibility.

How will we reach all of these different communities and individuals? This is where we need your help!

We have a two-phase recruitment process to identify potential attendees.

Phase 1 (right now)

  • Fill out this form! 
    • We’d love for you to nominate yourself, if you’re potentially interested in participating.
    • But a crucial part of this is to ALSO nominate someone else – a friend or someone you know who may not otherwise hear about this opportunity.
  • We’d also love for you to help share this form widely and help us reach people in different networks. If you TikTok, post it on TikTok. If you’re on LinkedIn, share it on your LinkedIn or a group. If you’re part of an offline support group, talk about it there. Or reach out and share the link with your advocacy organization and encourage them to nominate other advocates and ‘doers’ that they know.

Nominate someone you know for Convening The Center!
Phase 2 (in a few weeks):

  • Based on the first wave of nominated folks, we’ll work to make sure we’re striking the balance between people who are longer-timers in this space and people who are newly emerging in this type of work.
  • We’ll reach out to a selection of folks identified in phase 1 and ask for a little bit more information to help determine the final cohort of participants for the in-person meeting. (Goal: ~25 participants).

We’ve learned through Opening Pathways and other work in this space that more — and perhaps different — resources are needed for “doers” in healthcare who are not traditionally employed in this space.

We don’t expect the outcome of this project to solve all problems or identify a one-size-fits-all resource. However, we do hope to help manifest a new, more inclusive, and more effective vision for changing the future of healthcare.

The future we seek augments the existing health efforts of legacy institutions by coordinating the work of individual innovators, researchers, and advocates in a more inclusive community of practice. We do not think this will solve all problems around under-representation and the static network of those already “in” and doing this work, but it’s an important step and one we’re happy to be able to take.

FREQUENTLY ASKED QUESTIONS

  • Who is funding this project? How is it being funded? What organization are you partnering with?Robert Wood Johnson Foundation (RWJF) is a great partner, and I’m proud that they’re willing to fund this meeting. Paul Tarini is our project officer at RWJF. While my co-PI is based at an academic institution, we decided to experiment with using a fiscal sponsorship organization to manage the grant. We identified and selected Trailhead Institute, a 501(c)(3) organization that works with a variety of projects and organizations in the public health space. I’ll write more about this in the future, but so far they have been GREAT administrative partners and have been seamless to work with during the application and kickoff of the grant process. Also, we learned from the past Convening that it would be beneficial to directly fund a meeting planner to do logistics work (rather than me), so we included in our budget a meeting planner that is coming from Trailhead to help with administrative and logistics planning for the meeting. Yay!
  • How will you select participants?Our goal is to gain a diverse slate of people, including diversity in socioeconomic background, ethnicity, gender, education, area of healthcare, type of work, how long they have been doing the work, etc. Before finalizing the list of participants we will collect information from potential participants and make sure they’d be interested and available to participate once the date is selected.
  • What are the outputs?We anticipate one primary output from this meeting to be relationships among attendees. After observing the strength and resilience generated for individuals by participating in our Opening Pathways convening, we see relationships as a powerful support for the efforts of healthcare “doers”. By relationships, we do not mean a community of 25. Community building is long-term labor-intensive work. Rather, we hope that some attendees will find common ground and collaborate in various ways after Convening the Center.We do not expect to produce a particular report or website from this work. However, we do expect to write blog posts about our process of developing the meeting, the experience of facilitating the meeting, and the insights derived from conversations at the meeting. We anticipate those insights to be about the wants and needs of healthcare doers, what they wish they had when they started out, what they’d tell their younger selves, and how to refine and scale various healthcare improvement efforts.
  • What about COVID-19?While we have been planning this meeting for August or September 2020, we are aware that currently (in March 2020) there is a lot of uncertainty about how COVID-19 may impact meetings after the next few months. While we are beginning virtual recruitment of participants, we will work with public health officials to get guidance on whether August/September still makes sense, and if not, work with both participants and public health to determine a suitable alternative timeline for holding the meeting. If that’s not feasible, we may find ways to meet this goal virtually.Update: Obviously, it does not make sense to convene the center physically for an in-person meeting in 2020. We are aiming for a gathering – in-person if safe and appropriate, otherwise adapting to virtual – in 2021. We’ll keep everyone posted!

(Update: see the latest about Convening the Center in 2021 here)

Automated Insulin Delivery: How artificial pancreas “closed loop” systems can aid you in living with diabetes (introducing “the APS book” by @DanaMLewis)

Tl;dr – I wrote a book about artificial pancreas systems / hybrid and fully closed loop systems / automated insulin delivery systems! It’s out today – you can buy a print copy on Amazon; a Kindle copy on Amazon; check out all the content on the web or your phone here; or download a PDF if you prefer.

A few months ago, I saw someone share a link to one of my old blog posts with someone else on Facebook. Quite old in fact – I had written it 5+ years ago! But the content was and is still relevant today.

It made me wonder – how could we as a diabetes community, who have been innovating and exploring new diabetes technology such as closed loop/artificial pancreas systems (APS), package up some of this knowledge and share it with people who are newer to APS? And while yes, much of this is tucked into the documentation for DIY closed loop systems, not everyone will choose a DIY closed loop system and also therefore may not see or find this information. And with regards to some of the things I’ve written here on DIYPS.org, not everyone will be lucky enough to have the right combination of search terms to end up on a particular post to answer their question.

Automated_Insulin_Delivery_by_DanaMLewis_example_covers_renderingThus, the idea for a book was born. I wanted to take much of what I’ve been writing here, sharing on Facebook and Twitter, and seeing others discuss as well, and put it together in one place to be a good starting place for someone to learn about APS in general. My hope is that it’s more accessible for people who don’t know what “DIY” or “open source” diabetes is, and it’s findable by people who also don’t know or don’t consider themselves to be part of the “diabetes online community”.

APSBook_NowAvailable_DanaMLewisIs it perfect? Absolutely not! But, like most of the things in the DIY community…the book is open source. Seriously. Here’s the repository on Github! If you see a typo or have suggestions of content to add, you can make a PR (pull request) or log an issue with content recommendations. (There’s instructions on the book page here with how to do either of those things!) I plan to make rolling updates to it, so you can see on the change log page what’s changed between major versions.)

It’s the first book out there that I know of on APS, but it won’t be the only one. I hope this inspires or moves more people to share their knowledge, through blogs or podcasts or future books, with the rest of our community and loved ones who want and need to learn more about managing type 1 diabetes.

“I will immediately recommend this book not just to people looking to use a DIY closed loop system, but also to anybody looking to improve their grasp on the management of type 1 diabetes, whether patient, caregiver, or healthcare provider.”

Aaron Neinstein, MD
Endocrinologist, UCSF

And as always, I’m happy to share what I’ve learned about the self-publishing process, too. I previously used CreateSpace for my children’s books, which got merged with Amazon’s Kindle Direct Publishing (KDP), and there was a learning curve for KDP for both doing the print version and doing the Kindle version. I didn’t get paid to write this book – and I didn’t write it for a profit. Like my children’s books, I plan to use any proceeds to donate copies to libraries and hospitals, and send any remaining funds to Life For A Child to help ensure as many kids as possible have access to insulin, BG monitoring supplies, and education.

I’m incredibly grateful for many people for helping out with and contributing to this book. You can see the full acknowledgement section with my immense thanks to the many reviewers of early versions of the book! And ditto for the people who shared their stories and experiences with APS. But special thanks go in particular to Scott for thorough first editing and overall support of every project I bring up out of the blue; to Tim Gunn for beautiful cover design of the book; and to Aaron Kowalski to be kind enough to write this amazing foreword.

Amazon_Button_APSBook_DanaMLewis

Tips and tricks for real life and living with an ankle fracture

As I wrote in a previous post with much more detail (see here), I fell off a mountain and broke my ankle in three places, then managed to break a bone in my 5th toe on the other foot. This meant that my right ankle was in a hard cast for 6 weeks and I was 100% non-weight bearing…but this was challenging because the foot meant to be my stable base for crutching or knee scootering was often pretty wobbly and in a lot of pain.

This post is a follow up with more detailed tips and lessons learned of things that were helpful in living with a leg cast, as well as what the return to weight bearing was really like. I couldn’t find a lot of good information about the transition to weight bearing was really like, so this is my take on information I was looking for and would have appreciated before and during the weight bearing progression process. (And if you’re looking for diabetes-specific stuff, it’s in the last section!)
Tips_weight_bearing_DanaMLewis
Dealing with lack of energy and fatigue

First, it’s worth noting something major about a fractured bone, and *especially* true if it’s a big bone fracture like some of mine were: it takes a lot of healing, which means a lot of energy going to the healing and not much energy left for every day living. I was constantly exhausted – and surprised by this fatigue – pretty much throughout this process. It made sense in the early days (say weeks 1-2 after fracture), but was frustrating to me how little I had energy to do even in the 4-6 weeks after my fracture.

But, then it got worse. Returning to weight bearing took *even more* energy. For example, on the first day of partial weight bearing, I was tasked with putting 25 lbs of weight on my foot in the walking boot. First by placing my foot on the scale and getting reliable with being able to put the right amount of weight on the boot; then by standing and repeating with the scale; then taking a few steps (with the crutches taking the rest of my weight) and re-calibrating with the scale until I was confident in that weight. With weight bearing progression, you’re supposed to spend up to an hour a day working on this.

I took to heart what my ortho said about not progressing fast if you only do 5-10 minute chunks, so after the first day, I tried to always do 10-15 minute chunks at a minimum, with a longer chunk wherever possible as permitted by pain and my energy levels.

But the first few days were really, really tough. It was hard to switch to a new weight every two days – because this meant readjusting how I was stepping/walking, and how much weight and where I placed my crutches. I started with a blister on my right palm, which turned into a squished nerve that made my right hand go numb, and ultimately damaged some tendons in my right wrist, too. This made it painful to use the crutches or even drive my knee scooter when I wasn’t focusing on weight bearing. So I had a lot of pain and suffering in the WB progression process that probably contributed to how fatigued I was overall.

So one of my biggest pieces of advice for anyone with broken bones is to expect your energy to take a(nother) dip for the first few weeks after you start returning to weight-bearing (or return to normal activity outside your cast). It’s a *lot* of work to regain strength in atrophied muscles while still also doing the internal healing on the broken bones!

Tips to deal with so much fatigue as you return to weight bearing:

Some of the tips and things I figured out for being non-weight bearing and sitting around with a hard cast came in handy for the weight-bearing progression fatigue, too.

  • I got a shower bench (this is the one I got) so that it was easy to sit down on and swing my legs over into the shower/bathtub. Once I was out of my hard cast, I still can’t weight bear without the boot, so I still need a sitting shower/bath solution while I return to weight bearing. I also removed the back after a while, so it was easier to sit in either direction depending on preference (washing hair/not) without having to ask Scott to remove the back and re-attach it on the other side.
  • Speaking of showers, I put a toothbrush and toothpaste in the shower so I can also brush my teeth there while seated.
  • I still keep most of my toiletries in the bedside table (or you could have a caddy by the bedside) so I can brush my hair, take my contacts out or put them in, wipe my face (facewipes instead of having to stand at the sink to wash my face), etc. from the bed.
  • I am taking ibuprofen 4x a day, and I get tired of opening the bottle. So I dumped a pile of ibuprofen on my bedside table to make it easy to reach and remember to take first thing in the morning or at night. (There are no kids or pets in my household; keep safety in mind if you have kids etc in your household – this solution may not work for you).
  • The one time I tended to forget to proactively take my medication was mid-day, so I added a recurring calendar event to my calendar saying “take ibuprofen if you haven’t 2x a day” around 2pm, which would be the latest I would take my second round, even if I woke up later in the day and my first dose was later in the morning. This has helped me remember multiple times, especially on weekends or times when I’m away from my desk or bed where I would have the meds visible as a reminder.
  • Pre-mix protein powder (this is what I chose) into the beverage of choice in advance, and keep it in individual containers so it’s easy to get and take (and if I’m really tired, round tupperware containers that have measurement lines make it easy to measure liquid into, put the lid on to shake it up, and drink out of without having to find another cup). I had Scott do this several days in advance when he went on a trip, and we kept doing it in advance even after he got home.
  • I kept using my portable desk for working, taking video calls propped up in the bed with pillows behind me, and also laying the surface flat to eat meals from when I was too tired to get out of the bed.

Other advice for the return to weight-bearing:

If you’re like me, you’ll switch back to weight-bearing accompanied by getting out of your hard cast and getting a walking boot of some sort. If you can, ask your ortho/doc in advance what kind of boot they’ll put you in. It’s often cheaper to get the boot yourself. Perfect example: my ortho didn’t tell me what kind of boot I would need, and I looked at various boots online and saw they ranged $50-100 on Amazon. At my appointment he asked if I brought a boot and since I didn’t, they’d provide one..and the paperwork I signed stated the price would be $427 (::choking::) if the insurance didn’t cover it. Insurance negotiated down to $152 for me to pay out of pocket for since I haven’t hit my deductible…which is still 2-3x more than retail cost. UGH. So, if you can, buy your walking boot via retail. (Same goes for purchasing a knee scooter (here’s the one I got) – it may be cheaper to buy it new through Amazon/elsewhere than getting a medical purchase that goes through insurance and/or trying to do a rental.)

  • You’ll also probably end up with a boot with lots of velcro straps. When you undo your boot, fold back the strap on itself so it doesn’t stick to the boot, another strap, your clothes, etc.
Other equipment that has come in handy:
  • Get multiple ankle braces. I had a slightly structured ankle brace with hard sides that made me feel safer the first few nights sleeping out of the cast, and it was often easier to go from the bed to the bathroom on my knee scooter or crutches with the ankle brace(s) instead of re-putting on my walking boot and taking it off again for a shower. (I transitioned to sleeping in a lighter ankle brace after a week or so, but still used the structured brace inside the waterproof cast bag for swimming laps to help protect my ankle.)
  • An ice pack with a strap to put around your ankle/broken joint. I had gotten this ice pack for my knee last fall, and strap it and another ice pack to my ankle to get full joint coverage.
  • Wide leg athletic pants…ideally ones that you can put on/off without having to take your boot off. (Women should note I found better athletic pants for this purpose in the men’s athletic section at Target..but be aware a lot of the modern men’s style have tapered legs so make sure to watch out for those and have enough width to get over your boot). Taking off the boot is exhausting with so many velcro straps, so any time I can get dressed or undressed without having to remove the boot if I am not otherwise removing the boot is a win.
  • Look online for your state’s rules for a temporary handicap parking pass, and take the paperwork to your first ortho appointment to get filled out. Also, make sure to note where the places are that you can drop off the paperwork in person (in Seattle it was not the same as the DMV offices!), or otherwise be aware of the time frame for mailing those in and receiving the pass. The handicap parking placard has been helpful for encouraging me to get out of the house more to go to the store or go to a restaurant when otherwise I’m too exhausted to do anything.
  • A new shiny notebook for writing down your daily activities and what you did. If you’re not a notebook type person, use an app or note on your phone. But despite being mostly digital, I liked having a small notebook by the bed to list my daily activities and check the box on them to emphasize the activities I was doing and the progress I was making. At the beginning, it was helpful for keeping track of all the new things I needed to do; in the middle, it was useful for emphasizing the progress I was making; and at the end it felt really good to see the light of the end of the tunnel of a few pages/days left toward being fully weight bearing.
Weightbearing_notebook_DanaMLewis

Other tips for getting used to a walking boot and transitioning to weight bearing:

  • Don’t be surprised if you have pain in new areas when you move from a hard cast to a walking boot. (Remember you’ll be moving your leg or limbs in different ways than they’ve been accustomed to).
  • My ortho told me the goal of weight bearing progression is to understand the difference between discomfort (lasts a few minutes) and pain (lasts a few hours). You’re likely going to be in discomfort when doing weight bearing progression – that’s normal. Pain (i.e. sharp pain) is not normal, and you should take a break or back down to a previous weight (follow your protocol) if you have it. I was lucky – the only few times I had pain was from trying to press down forcefully on the scale when seated, rather than standing on the scale and naturally letting my weight on my leg. I didn’t end up plateauing at any weight, and was able to follow my protocol of 25lb weight bearing added every 2 days and get to full weight bearing with no delays.
  • If you have a watch with a stopwatch feature, use it. It’s hard to keep track of actual time spent walking (especially at first when 90 seconds feels like 6 minutes) with just a normal watch/clock. You could also use your smartphone’s timer feature. But tracking the time and pausing when you pause or take a break helps make sure you’re accurately tracking toward your hour of walking.
  • The process wasn’t without discomfort – physical and emotional. Putting weight on my leg was scary, and every new weight day was hard as I dealt with the fear and processing of the discomfort, as well as learning how to step and walk and do my crutches in a new way yet again.
  • But what I learned is that the first 5 minutes of every new weight day ALWAYS sucked. Once I recognized this, I set the goal to always tough out a 15 minute session after I calibrated on the scale by walking slowly around my apartment. (I put my headphones in to listen to music while I did it). As long as there was only discomfort and not pain, I didn’t stop until after 15 minutes of slow walking with that weight and also re-calibrated on the scale during and after to make sure I was in the right ballpark.
  • I had to spend the first half hour or so working on my weight bearing by myself. I couldn’t talk on the phone or talk with Scott while I did it; it required a lot of concentration. (The only thing I could do is listen to music, because I’m used to running with music). So distractions did not help when I got started, but toward the end of the hour I could handle and appreciate distractions. Same for day 2 of a weight – having distractions or a task to do (e.g. walk from A to B, or walking while my nephew was on his scooter) helped pass the time and get me to complete my hour or more of weight-bearing work.
  • Be careful with your hands and wrists. Blisters are common, and I managed to both squish a nerve (which caused me to have a numb side of my hand and be unable to type for several days) and also pull or damage tendons on both sides of my wrists. I was torn between choosing to delay my weight bearing progression work, but also recognizing that the sooner I got to full weight bearing the sooner I could completely ditch my crutches and be done hurting my hands. So I chose to continue, but in some cases shortened my chunks of WB walking down to 15 minutes wherever possible to reduce the pain and pressure on my hands.
You’ll likely also be doing range of motion exercises. At first, it’s scary how jerky your motions may be and how little your muscles and tendons respond to your brain’s commands. One thing I did was take a video on day 1 showing me pointing and stretching my ankle, and doing my ABC’s with my foot. Then every week or so when I was feeling down and frustrated about how my ankle wasn’t fully mobile yet, I’d take another video and watch the old one to compare. I was able to see progress every few days in terms of being able to point my foot more, and wider motions for doing the ABC’s with my foot.
Also remember, once you’re weight bearing and working toward getting rid of your crutches, you can use things like strollers or grocery carts to help you balance (and also kill some of your weight bearing time!) without crutches. The practice will make it easier for re-learning your posture and gaining confidence in walking without crutches.

Using my nephew's stroller to support me walking in a boot after my ankle fracture as I returned to weight bearing

Don’t you usually talk about diabetes stuff on this blog? 😉

(If anyone finds this post in the future mainly for ankle fracture and weight bearing transition/progression tips, you can ignore this part!)

Diabetes-wise, I’ve had a pretty consistent experience as to what I articulated in the last post about actually breaking bones.

  • It was common for my first few days of progressive weight bearing to have a small pain/stress rise in my BGs. It wasn’t much, but 20-30 points was an obvious stress response as I did the first few 15 minutes of weight bearing practice. The following days didn’t see this, so my body was obviously getting used to the stress of weight bearing again.
  • However, on the flip side, the first week of weight bearing progression also caused several lows. The hour of walking was the equivalent of any new activity where I usually have several hours later delayed sensitivity to insulin out of nowhere, and my blood sugars “go whoosh” – dropping far more than they normally would. I had two nights in a row in the first week where I woke up 2-3 hours after I went to sleep and needed to eat some carbs. This normally happens maybe once every few months (if that) now as an OpenAPS user, so it was obviously associated with this new surge of physical activity and hard work that I was doing for the weight bearing.
  • Overall, while I was 100% non-weight bearing, I was eating slightly (but not much) lower carb and slightly less processed food than I usually do. But not always. One day I ended up having 205+ grams of carbs for me (quite a bit more than my average). However, thanks to #OpenAPS, I still managed to have a 100% in range day (80-150 mg/dL). Similarly on a travel day soon after, I ate a lot less (<50g carb) and also had a great day where OpenAPS took care of any surges and dips automatically – and more importantly, without any extra work and energy on my part. Having OpenAPS during the broken bone recovery has been a HUGE benefit, not only for keeping my BGs in range so much of the time for optimal healing, but also for significantly reducing the amount of work and cognitive burden it takes to stay alive with type 1 diabetes in general. I barely had energy to eat and do my hour of weight bearing each day, let alone anything else. Thankfully good BGs didn’t fall by the wayside, but without this tech it certainly would have.

And finally the pep talk I gave myself every day during weight bearing progression work:

This is short-term and necessary discomfort and suffering on the way to weight bearing. It sucks, but you can and will do it. You have to do it. If you need to take a break, take a break. If you need to do something else to get yourself pumped up and motivated to do your weight bearing, it’s ok to do that. But you’ll get there. Slowly, but surely. You’ve got this!

Proof that I did get there:

Lots of 100 emojis celebrating 100% weight bearing after my broken ankle

Best of luck and lots of support and encouragement to anyone who’s working their way to weight bearing after an injury, and many thanks to everyone who’s supported me and cheered me on virtually along the way!

2021 update – see this post about (finally) running the marathon that I had signed up for before I broke my ankle!

4 years DIY closed looping with #OpenAPS – what changed and what hasn’t

It’s hard to express the magnitude of how much closed looping can improve a person with diabetes’ life, especially to someone who doesn’t have diabetes or live closely with someone that does. There are so many benefits – and so many way beyond the typically studied “A1c improvement” and “increased time in range”. Sure, those happen (and in case you haven’t seen it, see some of the outcomes from various international studies looking at DIY closed loop outcomes). But everything else…it’s hard to explain all of the magic that happens in real life, that’s made so much richer by having technology that for the most part keeps diabetes out of the way, and more importantly: off the top of your mind.

Personally, my first and most obvious benefit, and the whole reason I started DIYing in the first place, was to have the peace of mind to sleep safely at night. Objective achieved, immediately. Then over time, I got the improvements in A1c and time in range, plus reduction in time spent doing diabetes ‘stuff’ and time spent thinking about my own diabetes. The artificial pancreas ‘rigs’ got smaller. We improved the algorithm, to the point where it can handle the chaos that is everything from menstrual cycle to having the flu or norovirus.

More recently, in the past ~17 months, I’ve achieved an ultimate level of not doing much diabetes work that I never thought was possible: with the help of faster insulin and things like SMB’s (improved algorithm enhancements in OpenAPS), I’ve been able do a simple meal announcement by pressing a button on my watch or phone..and not having to bolus. Not worrying about precise carb counts. Not worrying about specific timing of insulin activity. Not worrying about post-meal lows. Not worrying about lots of exercise. And the results are pretty incredible to me:

We should be measuring and reducing user burden with AID in addition to improving TIR and A1c

But I remember early on when we had announced that we had figured out how to close the loop. We got a lot of push back saying, well, that’s good for you – but will it work for anyone else? And I remember thinking about how if it helped one other person sleep safely at night..it would be worth the amount of work it would take to open source it. Even if we didn’t know how well it would work for other people, we had a feeling it might work for some people. And that for even a few people who it might work for, it was worth doing. Would DIY end up working for everyone, or being something that everyone would want to do? Maybe not, and definitely not. We wouldn’t necessarily change the world for everyone by open sourcing an APS, but that could help change the world for someone else, and we thought that was (and still is) worth doing. After all, the ripple effect may help ultimately change the world for everyone else in ways we couldn’t predict or expect.

Ripple_effect_DanaMLewisThis has become true in more ways than one.

That ‘one other person’ turned into a few..then dozen..hundreds..and now probably thousand(s) around the world using various DIY closed loop systems.

And in addition to more people being able to choose to access different DIY systems with more pumps of choice, CGMs of choice, and algorithm of choice, we’ve also seen the ripple effect in the way the world works, too. There is now, thankfully, at least one company who is evaluating open source code; running simulations with it; and where it is out-performing their original algorithm or code components, utilizing that knowledge to improve their system. They’re also giving back to the open source diabetes community, too. Hopefully more companies will take this approach & bring better products more quickly to the market. When they are ready to submit said products, we know at least U.S. regulators at the FDA are ready to quickly review and work with companies to get better tools on the market. That’s a huge change from years ago, when there was a lot of finger pointing and what felt like a lot of delay preventing newer technology from reaching the market. The other change I’m seeing is in diabetes research, where researchers are increasingly working directly with patients from the start and designing better studies around the things that actually matter to people with diabetes, including analyzing the impact and outcomes of open source technology.

After five years of open source diabetes work, and specifically four years of DIY closed looping, it finally feels like the ripples are ultimately helping achieve the vision we had at the start of OpenAPS, articulated in the conclusion of the OpenAPS Reference Design:

OpenAPS_Reference_Design_conclusionIs there still more work to do? Absolutely.

Even as more commercial APS roll out, it takes too long for these to reach many countries. And in most parts of the world, it’s still insanely hard and/or expensive to get insulin (which is one of the reasons Scott and I support Life For A Child to help get insulin, supplies, and education to as many children as possible in countries where otherwise they wouldn’t be able to access it – more on that here.). And even when APS are “approved” commercially, that doesn’t mean they’ll be affordable or accessible, even with health insurance. So I expect our work to continue, not only to support ongoing improvements with DIY systems directly; but also with encouraging and running studies to generalize knowledge from DIY systems; hopefully seeing DIY systems approved to work with existing interoperable devices; helping any company that will listen to improve their systems, both in terms of algorithms but also in terms of usability; helping regulators to see both what’s possible as well as what’s needed to successfully using these types of system in the real world. I don’t see this work ending for years to come – not until the day where every person with diabetes in every country has access to basic diabetes supplies, and the ability to choose to use – or not – the best technology that we know is possible.

But even so, after four years of DIY closed looping, I’m incredibly thankful for the quality of life that has been made possible by OpenAPS and the community around it. And I’m thankful for the community for sharing their stories of what they’ve accomplished or done while using DIY closed loop systems. It’s incredible to see people sharing stories of how they are achieving their best outcomes after 45 years of diabetes; or people posting from Antartica; or after running marathons; or after a successful and healthy pregnancy where they used their DIY closed loop throughout; or after they’ve seen the swelling in their eyes go done; etc.

The stories of the real-life impacts of this type of technology are some of the best ripple effects that I never want to forget.

Getting ready for #2018ADA (@DanaMLewis) & preparing to encourage photography

We’re a few weeks away from the 78th American Diabetes Scientific Sessions (aka, #2018ADA), and I’m getting excited. Partially because of the research I have the honor of presenting; but also because ADA has made strides to (finally) update their photography policy and allow individual presenters to authorize photography & sharing of their content. Yay!

As a result of preparing to encourage people to take pictures & share any and all content from my presentations, I started putting together my slides for each presentation, including the slide about allowing photography, which I’ll also verbally say at the start of the presentation. Interestingly to me, though, ADA only provided an icon for discouraging photography, saying that if staff notice that icon on any photos, that’s who will be asked to take down photos. I don’t want any confusion (in past years, despite explicit permission, people have been asked to take down photos of my work), so I wanted to include obvious ‘photography is approved’ icons.

And this is what I landed on for a photography encouraged slide, and the footer of all my other slides:

Encouraging photography in my slides Example encouraging use of photography in content slidesEncouraging photography in the footer of my slides

And, if anyone else plans to encourage (allow) photography and would like to use this slide design, you can find my example slide deck here that you are welcome to use: http://bit.ly/2018ADAexampleslides

I used camera and check mark icons which are licensed to be freely used; and I also licensed this slide deck and all content to be freely used by all! I hope it’s helpful.

Where you’ll find me at #2018ADA

And if you’re wondering where and what I’ll be presenting on with these slides…I’ll be sharing new content in a few different times and places!

On Saturday, I’m thrilled there is a full, 2-hour session on DIY-related content, and to get to share the stage with Jason Wittmer, Lorenzo Sandini, and Joyce Lee. That’s 1:45-3:45pm (Eastern), “The Diabetes Do-It-Yourself (DIY) Revolution”, in W415C (Valencia Ballroom). I’ll be discussing some of the data & research in DIY diabetes! A huge thanks to Joshua Miller for championing and moderating this session.

I’m also thrilled that a poster has been accepted on one of the projects from my RWJF grant work, in partnership with Tim Street (as well as Scott Leibrand, and Sayali Phatak who is heading our data science work for Opening Pathways). The embargo lifts on Saturday morning (content will be shared online then), and the poster will be displayed Saturday, Sunday, and Monday. Scott and I will also be present with the poster on Monday during the poster session from 12-1pm.

And last but not least, there is also an oral presentation on Monday evening with a new study on outcomes data from using OpenAPS. I’ll be presenting during the 4:30-6:30pm session (again in W415C (Valencia Ballroom)), likely during the 6-6:15pm slot. I’m thrilled that Scott Swain & Tom Donner, who partnered on this study & work, will also be there to help answer questions about this study!

As we have done in the past (see last year’s poster, for example), we plan to share all of this content online once the embargo lifts, in addition to the in-person presentations and poster discussions.

A huge thanks, as always, goes to the many dozens of people who have contributed to this DIY community in so many ways: development, testing, support, feedback, documentation, data donation, and more! <3

RIP, original looping pump

In 2014, a lightbulb went off. We could use Ben’s code to read and write to a particular version of an old pump. We had built an algorithm to take is input carb, BG, and insulin dosing data, and to output recommendations for action. If we hooked those together, we could close the loop. We could close the loop? Cool! We should try that. But wait – I didn’t have a compatible pump..

This is another place social media played a role in the story that is #OpenAPS. I posted on Facebook asking if anyone had one of these older model pumps sitting around unused, because we wanted to use it for research and try to close the loop. Would anyone dust off the dust bunnies on one and share? The answer turned out to be yes. A very kind person sent me the pump, we put it into play, and we closed the loop. I put the pump on, and the rest is history. Yay!

A year ago, I noticed a broken piece of blue plastic on the carpet of a hotel room. “Hey, that looks like my pump color…” “!!!! A piece of my pump broke off!”. Luckily, it was the upper edge of the reservoir; it did not impact usability of the pump; I taped it back on and continued to tape it over time. I thought eventually this, or other cracks or other physical broken pieces, would be what eventually would be the cause of failure of this beloved, well-used second-generation pump.

The edge of my pump's reservoir section broke off and I tried to tape it back on.

Some history for those who don’t know the backstory: we’re talking about using older generation pumps because it was discovered that someone (if in range, and with the right equipment) could remotely command the dosing of the pump. This was discovered by a security researcher, and the FDA had the manufacturer fix this in a future version. Thus, more modern pumps you couldn’t remotely set temp basals on, or remotely bolus. Turns out, that “hole” is what enabled us to close the loop: the ability to remotely set temporary basal rates. That is a risk. Some people don’t like that risk, and choose not to DIY closed loop because they don’t want to accept that risk. That’s fine. Other people decide that the reduction in the baseline risks of diabetes due to DIY closed looping outweigh any additional risk, and with appropriate safety guards like backup alarms, hardware and software dosing limits, etc. decide to use these pumps regardless. “YDMV” (your diabetes may vary) applies to what devices and systems you choose to help you with your diabetes, too. I personally choose to use these devices to close the loop, but acknowledge not everyone wants to – and that it shouldn’t have to be this choice that drives (for some people) whether or not to DIY loop. That is why I’ve had active conversations with every pump manufacturer for going on 4 years now about the need to have secure but documented communication protocols: I would love for people (including myself) to be able to have a secure, safe in-warranty pump with which to close the loop. Now: I’m only one person. I haven’t been able to move the needle on this myself. I’ve asked and encouraged (see this visual in the OpenAPS docs) members of the community to also take up and advocate for this. And people have. But I think it’s going to take the resources of something like the JDRF Open Protocol Initiative to really get companies to finally focus on this. And hopefully this will make the infrastructure changes needed to make it possible to achieve the vision of having a secure, in-warranty modern pump (and one that comes with the ability to choose your preferred CGM and preferred closed loop algorithm, too!).

I’ve continued to cut and apply sensor tape “pump bandaids” over the last year. But something changed about a month ago: suddenly, with normal AAA battery changes of the pump, the pump started losing the time settings with every battery change. (And battery changes happen more frequently with DIY closed looping because we communicate so frequently with the pump; mine go around ~6+ days). At first I thought I was just too slow in changing the battery. But even with a lightning quick battery change, the pump would lose the settings. No big deal…except that every time it required me to reset the clock, rewind, and reprime. Which meant drops of lost insulin (ugh), and a hassle overall.

I lasted about a month before I decided to give up. Not only was the change and reset process a pain, but because the internal battery that maintains settings when you change the AAA is apparently dying, it also means that some of the history gets wiped from the pump. Again – not a big deal because I’m uploading everything from the pump to multiple places every 5 minutes, but it is still annoying. It makes it hard to skim back through the last month on the pump to analyze how much insulin I’m using on average, when every 6 days two days get blotted off the pump’s record.

@DanaMLewis switches pumpsAnd so, I threw in the towel (sadly) last night on this beautiful, long-lasting work horse of a pump that I’ve been using for 3.5+ years. I have such an emotional tie to it because it’s what enabled me to close the loop. It’s what led us to be able to share DIY closed looping with the world. And because of the reality of using (mostly*) second hand pumps for DIY closed looping, throwing the towel on a partially busted but still-kind-of-usable loopable pump feels wrong when there are lots of people who are desperately looking for pumps so they can close the loop for themselves.

* I say mostly, because there are in fact other kinds of DIY-compatible looping pumps – they’re just not approved or available in the U.S. where I live. The DANA*R or DANA*RS pumps (made by SOOIL, they have nothing to do with me!) have bluetooth capabilities built in, so they can communicate with an Android phone. They’re very popular and usable in places like Europe & Asia, where they’re in-warranty and on the market. They can be used with AndroidAPS (which uses OpenAPS’s oref0 algorithms for looping). Because of the bluetooth comms, no extra device is needed, and the phone with AndroidAPS can communicate to the pump directly. Additionally, the AndroidAPS dev team has also been working hard on evaluating other pumps, and the Roche Combo was recently established as another pump that would be compatible with AndroidAPS; again due to built-in bluetooth capabilities.

Sadly, the DANA*R(S) is not FDA approved in the US and thus not available; and the Combo pump is no longer being actively distributed by Roche in the US (even though it’s approved) – so there are fewer pump options in the U.S. right now. But again, I’m hopeful for more change and more options in the future as the pump companies begin to leverage resources from the Open Protocol Initiative.

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.

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