DIY Diabetes in New Zealand

eSurvey of DIY diabetes technology users in New Zealand

Ngā mihi nui e hoa mā

We invite you to participate in a research project that aims to provide an overview of the users of DIY diabetes technologies users within Aotearoa New Zealand. This information section provides an overview of the research project. Please read it carefully before deciding whether to take part in the project.

The purpose of the research is first to get an estimate of the size of the DIY community and the range of technologies that are being used. We also want to find out the reasons why people are using these technologies, the benefits they link to these technologies and the support users want from the community and from diabetes clinicians.

The project is an unfunded collaboration between the University of Waikato and Nightscout New Zealand, a non-profit advocacy group that has been formed to support people with type one diabetes in New Zealand to access and implement new technologies to improve glycaemic control and quality of life. Your contribution to the study will enable us to share research findings with both user and clinical groups. We will present the findings to diabetes clinicians as part of our work to advocate for the community. And we will share our findings through the social media pages that we have recruited participants from so people with type one diabetes have access to the findings.
The project asks participants to complete an on-line survey of their user experiences. We estimate the survey will take 15 minutes to complete.

The researchers in this project are:
Dr. Hamish Crocket – University of Waikato and Nightscout New Zealand
Mr. Tim Gunn – Nightscout New Zealand
Dr. Damian Wiseman – Nightscout New Zealand
Mr. Samuel Leathwick– Nightscout New Zealand
Mr. Justin Walker– Nightscout New Zealand
Mr. Garry Dyet– Nightscout New Zealand

Participation in this project is voluntary and anonymous. This means:
– you choose whether or not you wish to take part;
– if there are questions you do not wish to answer you can leave these blank;
– if you have concerns while completing the survey, you have the right to withdraw by exiting the survey without submitting your answers, or by closing your browser window;
– once you have submitted your survey, it cannot be withdrawn from the study;
– the survey will not collect personal, identifying details of who participants are;
– there will be no consequences should you decide not to take part in the research;
– research materials will be stored securely in the password protected servers as required by the University of Waikato Ethics Committee.

If you have any questions about the study at any point, please contact lead researcher Hamish Crocket: hamish.crocket@waikato.ac.nz or 07 8384466 ext 6529
This research project has been approved by the Human Research Ethics Committee (Health) at the University of Waikato as HREC(Health)2022#06. Any questions or concerns about the ethical conduct of this research may be sent to the Secretary of the Committee, email humanethics@waikato.ac.nz, or Postal address, Human Research Ethics Committee (Health), University of Waikato, Te Whare Wananga o Waikato, Private Bag 3105, Hamilton 3240

Ngā mihi and thank you for considering participating in this project. Please click ok below if you wish to participate.
1.Are you the user of DIY diabetes technologies or are you a parent or carer for a child using DIY diabetes technologies?
2.What is the age of the user of the DIY diabetes technology?
3.What is the gender of the user of the DIY diabetes technology (the user may be you or a person you are a carer for)
4.Which ethnic group does the user of DIY technologies belong to?
5.Which region of Te Whatu Ora does the DIY user reside in? (note: Te Whatu Ora is currently using the same regions as the DHB system)
6.Approximately how many years have you used DIY diabetes technology?
Please indicate which of the following DIY diabetes technologies you use:
7.A third party device to convert a libre into CGM (please indicate which device you use)
8.Off-label use of Dexcom (if yes, please tick all that apply)
9.DIY CGM app
10.Open source data upload and visualisation
11.Open-Source Automated Insulin Delivery (also called DIY Artificial Pancreas System)
12.If you use Open-source Automated Insulin Delivery, please indicate which insulin pump
you use:
13.If you use Open-source Automated insulin delivery, please indicate if you are on the
Master branch or an alternative branch of the algorithm (the master branch is the default
branch)
For the following section, please indicate the extent to which each of the following statements matches with your reasons for using DIY diabetes technologies.
14.I use DIY diabetes technologies to save money
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
15.I use DIY diabetes technologies to improve glycaemic control
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
16.I use DIY diabetes technologies to reduce the stress of managing diabetes
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
17.I use DIY diabetes technologies because they are more customisable than commercial options
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
18.I use DIY diabetes technologies in order to spend less time managing diabetes
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
19.The successes using DIY diabetes technologies helps me stay engaged in diabetes
management
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
20.Please add any further reasons you have for using open-source and off-label diabetes
technologies in the box
In the following section, please indicate how strongly each of the challenges listed below applies to you:
21.It is difficult to source the parts required for DIY diabetes technologies
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
22.It is difficult to set up the technology
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
23.It is difficult to keep the technology running
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
24.It is difficult to get help from the DIY diabetes community when I need help with these
technologies
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
25.It is difficult to get help or support from my diabetes clinicians with DIY technologies
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
26.It is difficult to fund DIY diabetes technologies
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
27.Glucose control is still difficult around meal times if a pre-bolus isn’t used
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
28.Please list any other difficulties you have experienced with these technologies in the box
The remaining questions relate to the benefits you associate with using open-source and off-label diabetes technologies as well as your thoughts on the access to and support for diabetes technologies you would like to be available.
29.I do not think I could get equivalent benefits from commercial diabetes technologies
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
30.I would prefer to have access to and be able to use similar commercial diabetes technologies in place of DIY diabetes technologies
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
31.I feel able to talk freely to my diabetes clinicians about my use of DIY diabetes technologies
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
32.I value being able to help other users of DIY diabetes technologies through online groups and personal connections
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
33.Membership of the DIY diabetes technologies community is an important source of peer support for me
Does not apply to me
Applies to me a little
Applies to me somewhat
Applies to me very much
34.Please list any other challenges or difficulties you associate with DIY diabetes technologies in the box
35.Please list any other benefits you associate with use of DIY diabetes technologies
36.Please briefly describe any specific support you would like the DIY diabetes technologies community to provide to either new or existing members
37.Are there any diabetes technologies available elsewhere in the world that you are aware of that you would like access to?
38.What benefits do you perceive might arise from access to those technologies?
Current Progress,
0 of 38 answered