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!

Different ways to make a difference

tl,dr: There are many ways to make a difference, ranging from donating time/energy/ideas to financially supporting organizations who are making a difference.

When I was first diagnosed with diabetes (at age 14, three months into high school – ugh), I was stunned. And I didn’t want anyone to know, because I didn’t want to be treated differently. So for the first few months, I learned how to take care of myself, and did that quietly and went about my life: school, color guard, etc. I was frustrated with the idea of having to do all this stuff for the rest of my life, and wanted as little as possible to have to talk/think about it beyond the bare minimum I had to do.

However, after I talked the Latin Club into making our fundraising dollars from the Rake-a-thon go toward the American Diabetes Association, and I saw the reaction of the local staff when I walked in and dropped a check on the desk and turned around and tried to walk out the door. (They didn’t let me just walk out!) I agreed to volunteer and do more, and it changed my life.

I don’t know what first thing I did, but I quickly came to realize that doing things for the broader population of people with diabetes – maybe they had type 2, maybe they lived somewhere else, didn’t matter – made me feel SO much better about my own life with type 1 diabetes. I wasn’t alone. And so my mantra became “Doing something for someone else is more important than anything you would do for yourself.” And it’s proved to be true for me for 14 years.

Since I grew up in Alabama, that’s where I started getting involved first. Inspired by my parents’ volunteer efforts that I saw growing up, I would volunteer my time and energy for a variety of things:

  • Fundraising for the local walk
  • Actually helping out the day of the walk
  • Joining the planning committee for the walk and spending months helping figure everything out and doing both actual and metaphorical heavy lifting to help make the event happen

Because of my volunteer efforts, I was asked to speak at a fundraising breakfast in Birmingham. It was my first time ever giving a public talk, let alone publicly talking about living with diabetes. And because of the people I met that day, I began doing more volunteer things around the state – and it led me to applying and being selected as the National Youth Advocate for the American Diabetes Association, and later serving on national committees like the National Youth Strategies committee (where we developed and improved the “Wisdom” kits for newly diagnosed kids with diabetes, created a kid-focused section of the ADA website, etc.). And my involvement continued as I graduated college and moved to Seattle, still serving on national committees but also joining the Western Washington Leadership Board and doing the same type of local event volunteering, but now in Seattle. I also have done more around advocacy over the years, beyond my time as NYA. While in college, I was asked to testify before the Senate HELP committee, talking about the need to increase funding for disease research. I’ve also participated regularly in ADA’s Call to Congress, including this year, where Scott and I paid to fly to DC and talk with our Washington state representatives and senators about the critical need for funding NIH & CDC; maintaining critical diabetes programs; and the issues around insulin affordability.

But it was when I was asked to represent the US and attend the World Diabetes Congress in 2006 when my eyes were opened to the issues around insulin access and affordability.

IDF first did a youth ambassador program in 2006, bringing around two dozen young adults with diabetes to the World Diabetes Congress to participate, train in advocacy activities, etc.

Having grown up in Alabama, where diabetes (particularly type 2) is highly prevalent, I knew that not everyone could afford pumps and CGMs (especially back then, when CGMs were brand new, way less accurate, and still super expensive, even with insurance coverage). I also knew that insulin & supplies were expensive, and some people struggled with gaining access to them. (And I always felt very fortunate that since diagnosis, my parents were able to afford my insulin & supplies.)

However, while in South Africa, I learned from my new friends from other parts of Africa and the rest of the world that this was the tippy top of the ice berg. I learned about:

  • Kids are walking alone on roads for miles and hours to get to a clinic to get a single, daily shot of insulin.
  • They may only test their BGs once a week, or month, or quarter.
  • It’s not just kids – adults would have to stop working and walk for hours, too, choosing to get insulin to stay alive to be able to work another few days to help their family survive.
  • Some people would only get insulin once a week, if that, or once a day – compared to me, where I might have several injections a day, as often as needed to keep my BGs in a safe range.

It was astonishing, saddening, maddening, and terrifying. And living so far away from this part of the world, I wasn’t sure how I could help, until I met Graham Ogle who created the “Life for a Child” program to help tackle the problem, with the vision that no child should die of diabetes. Life for a Child helps less resource-supported countries provide insulin, syringes, other supplies, and education (both for people living with diabetes and healthcare providers). And, they’re a very resource-efficient organization.

When Scott and I first met, he knew nothing about diabetes (and actually thought my insulin pump was a pager – hah!). And while I volunteered a lot of my time and energy to help organizations, he is also dedicated to finding effective ways to safe lives, and as a result, is a longtime donor to Givewell.org and some of their top charities, like Against Malaria Foundation. Givewell is a nonprofit dedicated to finding giving opportunities and publishing the full details of their analysis to help donors decide where to give. And unlike charity evaluators that focus solely on financials, assessing administrative or fundraising costs, they conduct in-depth research aiming to determine how much good a given program accomplishes (in terms of lives saved, lives improved, etc.) per dollar spent.

Therefore, when Scott and I got married, we decided that in lieu of wedding-related gifts, we would ask people to support our charities of choice, to further increase the impact we would be able to have in addition to our own financial and other resource donations.

However, Life for a Child was not evaluated by Givewell. So Scott and I got on a Skype call with Graham Ogle to crunch through the numbers and try to come up with an idea for how effective Life for a Child is, similar to what Givewell has already done for other organizations.

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

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

(And some of the other charities and organizations don’t have clear numbers that can be this clearly tracked to lives saved. It’s not to say they’re not doing good work and improving lives – they absolutely are, and we support them, too – but this is one of the most clear and measurable ways to donate money and have a known life-saving impact related to diabetes.)

I am asked fairly frequently about what organization I would recommend donating to, in terms of diabetes research or furthering the type of work we’re doing with the OpenAPS community. It’s a bit of a complicated answer, because there is no organization around or backing the OpenAPS community’s work, and there are many ways to donate to diabetes research (i.e. through bigger organizations like ADA and JDRF or directly to research projects and labs if you know of a particular research effort you want to fund in particular).

And also, I think it comes down to seeing your donation make a difference. If you’d ask Scott, he would recommend AMF or other Givewell charities – but he’s seen enough people ask me about diabetes-related donation targets to know that people are often asking us because of wanting to make a difference in the lives of people with diabetes.

So, given all the ways I’ve talked about making a difference with different volunteer efforts (and the numerous organizations with which you could do so), and the options for making a financial donation: my recommendation for the biggest life-saving effort for your dollar will be to donate to Life for a Child, to help increase the number from the 18,000 children and 46 countries they’re currently helping in. (And, they now have a US arm, so if you are in the US your donation is tax-deductible).

You may have a different organization you decide to support – and that’s great. Thank you to everyone who donates money, time, and energy to organizations who are working to make our lives better, longer, and the world in general to be a better place for us all.