Get to know us – Dana Lewis

And today, our series on introducing the OPEN team continues with the person without whom DIYAPS and consequently “The OPEN project” would not exist.

Hi, I am Dana Lewis. After building my own (and the world’s first open source) DIY “artificial pancreas”, I helped found the open source artificial pancreas movement (known as “OpenAPS”), making safe and effective artificial pancreas technology available (sooner) for people with diabetes around the world.

I am a passionate advocate of patient-centered, -driven, and -designed research. I am an experienced community builder and facilitator and I have taken a leadership role in a number of research projects that bring together diverse perspectives (academic, industry, government, and patient communities, to name a few).

Currently, I am collaborating with PI, or co-PI on numerous grant-funded research projects on diabetes-related data science and artificial pancreas system projects. Most notably, I serve as Principal Investigator for a Robert Wood Johnson Foundation funded grant project called “Opening Pathways” to learn more about patient-led innovation and scientific discovery, and scale it in additional patient communities.

I frequently write and publish on topics specific to DIY diabetes work and the broader implications of patient-driven and -designed research. I also authored the book, “Automated Insulin Delivery: How artificial pancreas “closed loop” systems can aid you in living with diabetes“, to help more people understand automated insulin delivery systems.

Rather than coming from a traditional engineering background, I bring together a mix of technical and communication skills and a unique perspective to focus on bringing together individuals regardless of their traditional “role” in healthcare, which is one of the reasons I am proud to be a part of the OPEN consortium. I am serving as the leader of “work package 3” for OPEN, which is the technical development project aimed at increasing the ease of DIYAPS users to donate their data to research, as well as facilitating numerous research studies on community-donated DIYAPS data.

Thank you, Dana, for telling us about your outstanding efforts for the sake of all people with diabetes. We are very proud to have you with us!

OPEN published their first scientific study: Self-Reported Clinical Outcomes of Paediatric DIYAPS users

The OPEN consortium published their study on “Real-World Use of Do-It-Yourself Artificial Pancreas Systems in Children and Adolescents with Type 1 Diabetes: Online Survey and Analysis of Self-Reported Clinical Outcomes” in JMIR mHealth uHealth on July 30th, 2019.

The JMIR and JMIR mHealth and uHealth (Journal of Medical Internet Research) are the top #2 journals in digital health. Scientific articles are published online and openly accessible to all free of charge. mHealth is short for ´mobile health´ and describes the use of mobile communication devices (e.g. mobile phones) and wearable devices (e.g. smart watches) for information, data collection and health services. uHealth stands for ´ubiquitous healthcare´ and refers to the accessibility of healthcare to anyone, anytime and anywhere.

The recently published study reports first results of the “DIWHY survey” (more results to come!), an online survey to whom 209 caregivers of children and adolescents from 21 countries, all using a Do-It-Yourself Artificial Pancreas have responded. This survey is currently the largest study of DIYAPS users on a global level and provides new evidence about real-world use of these systems in children and adolescents.

Main findings of the study are:

  • Tight glycemic control and the lowest achievable HbA1c without severe hypoglycemia is important, especially for young people in order to prevent them from long-term complications and other diseases occurring alongside the diabetes.
  • This is far from reality even with modern (commercial) technology: Only 17% of all children and adolescents with diabetes achieve an HbA1c level below 7.5%. The latest guidelines even recommended an HbA1c of <7.0% for people with diabetes of all age groups.
  • Closed-loop insulin delivery systems (“Artificial pancreas”) designed for commercial use have improved the situation for people of all ages during various clinical trials. But these systems are not available, accessible or affordable in all countries. That is the reason why a community of people with diabetes and their families have created own closed-loop systems by combining commercial products with new tools and algorithms in order to adjust the insulin delivery to their glucose levels. This #WeAreNotWaiting community shares knowledge via open source platforms in order to help one another to improve their lives with diabetes. And up until now these systems are used by an increasing number of people with diabetes – including caregivers for their children.
  • Initial observational studies about DIYAPS have been auspicious, but there has not been enough research about children and adolescents using DIY Systems in everyday live. And that was the reason for OPEN to start a corresponding survey. The online survey was distributed via social media platforms generally utilized by the DIYAPS users. This survey was designed by OPEN´s interdisciplinary team of medical doctors, social scientists, public health researchers and patient innovators, so the questions were multifarious.
  • OPEN did not only ask for possible changes of the HbA1c and of the mean time in range (sensor glucose level between 70 and 180 mg/dl – 4 or 10 mmol/L) but also for the country they live in, their income, their education level, the duration of their diabetes and how long they are using their system, which one they are using and what made them create a system for the child they are responsible for.
  • Caregivers reported a significant HbA1c improvement although the average HbA1c of the participating children had already been below the recommended number: 6.91% down to 6.27%. And the longer the children used a DIYAPS, the better the HbA1c became. The mean time in range increased from 64.2% to 80.68%. Users of all DIYAPS systems and all age groups showed similar results.
  • Only a few number of participants (29 of 2009) reported about difficulties with DIYAPS. Mainly, these difficulties had been getting the devices and setting up the closed loop.
  • Comparing the results to the ones with adult users of DIYAPS systems one can say that the findings are in line with each other and with clinical trial results in commercially developed closed-loop systems.

We express our gratitude to the families of the DIYAPS community who supported and greatly contributed to this survey and we are looking forward to your thoughts and comments!

To read the full article, please find the original publication at JMIR mHealth uHealth here.

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Get to know us – Part 1

You read the pages here on the OPEN website or you follow us on facebook and/or twitter, and by now you have a good idea of what we do. You subscribed to our newsletter and will be well informed about oncoming events, research results and any other news of the OPEN project.
But if you also want to get to know us better, here is what you are looking for.

We are starting a series on introducing the OPEN team members. We will begin with an interview that Saskia held with our team member Timothy Skinner.

Hello Timothy, thank you for being so kind to answer some of our questions!
First of all, please tell us who you are.
I am Timothy Skinner, currently a Professor in Health Psychology at the University of Copenhagen.

Timothy, where are you from?
I was born and grew up in South London / Kent, but moved around the UK until I was 40. I then moved to Australia, where I worked until Jan 2018, when I moved to my current position.

And what is your background?
My professional background is as a psychologist, which I started studying in 1991, before that I worked in residential social work, with young people.

What are your special interests?
Diabetes has been my main research interest since the last year of my undergraduate psychology program. For my undergraduate thesis, I interviewed teenagers with diabetes about the support they receive from friends. This led to my PhD, which also looked at teenagers and young adults, continuing to look at how relationships with families and friends helped and hindered how people deal with living with diabetes. This has been my main interest since then. I also have interests in sleep, meditation and Argentine tango.

How did you become a part of the OPEN team?
I was asked to join the team. I don’t think because of my research reputation, but I think because of my reputation as a dissenting voice against the status quo of current diabetes care and practice, but you need to ask the rest of the team about that.

Why are you committed to the OPEN project?
Because it is solely about getting the best outcome for people with diabetes.

And what is your role at OPEN?
My main role is leading the part of the project that is focused on trying to quantify the quality of life benefits of using user developed closed loop systems.

What do you like the most about being a part of the team?
The part I like most about this project is that it is lead by people with diabetes. It is great to be working on a project where I do not have work through the challenges of conflicting goals, values and philosophies in every interaction.

Thank you, Timothy, for sharing some details of your life and work. We are very happy to have you with us!