September 26, 2016
The #NightscoutStudy is a research collaborative being developed with the Nightscout Foundation, patients and caregivers from the Nightscout community, and researchers from the University of Michigan.
We are interested in creating opportunities for citizen science, patient-designed research, and open science diabetes research.
The mission of the #NightscoutStudy Research Collaborative Innovation Network (COIN) is to create a collaborative innovation network for diabetes research that supports collaboration and co-design by patients and caregivers. With this collaborative, we seek to promote the participation of patients and caregivers throughout the research life cycle (research ideation, study design, study conduct, study dissemination) and facilitate collaborative interactions between individuals with type 1 diabetes and caregivers, teens with type 1 diabetes, and clinicians and researchers.
Since Fall 2015, the Leadership Committee has met at least 1-2 times per month to discuss the development of the Research COIN and potential research study ideas. Interviews have also been conducted with individuals from the community to determine research topics of interest. From these initial discussions and interviews, six research study ideas were selected. We polled individuals from the community via Facebook and our #NightscoutStudy Research email list to gauge interest in these six preliminary ideas:
- How does lack of sleep affect the mental well-being of people with T1D and their caregivers?
- How accurate and consistent are different types of blood glucose meters?
- How do certain foods affect BG/management?
- What is the ideal timing of insulin for meals and snacks?
- How does BG respond to various diets?
- What kind of glycemia do people commonly experience?
Furthermore, we held our first participatory design workshop on July 5, 2016 in coordination with the Children With Diabetes Friends For Life 2016 Conference in Orlando, FL. Several #NightscoutStudy collaborators (Joyce Lee, Ashley Garrity, James Wedding, Weston Nordgren, Ben West) led the workshop and engaged with the 25 attendees. Everyone participated in in an interactive exercise using design thinking methodology to ideate research study topics.
For the exercise, workshop participants were asked to work in pairs (ideally pairs would consist of someone with T1D and a caregiver of someone with T1D in order to share perspectives). In their pairs, participants spent ~10 minutes each interviewing one another about barriers, issues, and problems they experience as either a person with T1D or a caregiver of someone with T1D.
Participants were then asked to take ~5 minutes to independently reflect on what they heard their partner say during the interview and to write down what they thought their partner’s goals and wishes were based on the conversations.
Partners then shared their presumed goals and wishes with one another, and based on these insights, partners worked together to generate research study ideas that could provide additional insights about the identified problems. After working in pairs, participants were asked to share and further develop their research questions and ideas with the others at their table (groups of 6-10). Then participants shared research ideas with the larger group.
Ideas generated spanned a range of topics, including technology, devices and supplies, diet, exercise, sleep, medications, healthcare delivery, quality of life, and best practices for self-management. For example:
- How do A1c and other outcomes differ between CGM users and non-CGM users?
- How does the amount of time it takes for blood glucose testing (from getting blood on a test strip and inserted into the meter) affect the accuracy or readings? And how does it affect diabetes-related outcomes?
- How can we use CGM data to better understand the relationship between certain foods and BG?
- How do different exercises/activities impact blood sugar levels in young children (e.g., those under age 8)?
- How does amount of sleep affect an individual’s BG?
- Is there an easy, effective method to test if insulin has gone bad?
- How do different insurance companies handle non-formulary items?
- How does the DOC/virtual interaction improve knowledge and quality of life?
- What amount of carbs is appropriate for a given low reading (if using CGM, consider both numbers and arrows)?
Participants also came up with many non-research solutions that involved development of new, innovative tools, improved processes, and advocacy for T1D, including:
- Establish required continuing education for endocrinologists and CDEs so they can stay up to date on devices and technology.
- Create a ‘FAKEBETES’ experience for non-diabetics; user would wear some technology that would allow them to experience what their loved ones go through and have to do in order to manage T1D (e.g. could simulate what it’s like to have a high or low).
- Develop a universal panel that works with insurance companies and patients/families to help with approval processes.
- Policy changes to ensure that all schools and workplaces should allow time to check blood sugar and take insulin whenever needed without penalties.
After sharing ideas broadly with the group, each table selected one research question and collaboratively brainstormed about how to design a research study to address that question. In their groups, participants discussed study design, population, specific aim, hypothesis, outcomes, independent variables, and covariates.