Understanding the answers to our Type 1 Diabetes Registry survey

Earlier in the year, we shared a Type 1 Diabetes Registry survey, to try and understand if South Africans with Type 1 diabetes would be willing to sign up to a registry. Here are their answers…

Why would you be interested in signing up to a Type 1 Diabetes Registry?

There are five key reasons why people were interested in signing up for a registry:

1. Information
2. Practical and medical assistance;
3. Research;
4. Community; and
5. Frustration with the status quo.

In addition, expectations around data use emerged as a sixth key theme.

Information

Respondents consistently reflected on both the importance of and need for ‘information’ throughout their responses. However, although ‘information’ is mentioned, it’s not always clear what information is being referred to. In some instances, it’s clearly information for research or practical information that would assist in diabetes management (discussed below), but often it’s fairly ambiguous what exactly is being referred to.

Importantly, however, the relationship to information is seen as bi-directional. Some respondents see the registry as a way to get information – practical and medical
assistance, or information to find other people with diabetes – to build community. Others see their provision of information to the registry as a way to improve the state of information and research on diabetes in South Africa, raise awareness, and improve decision making.

“I have had diabetes now for 17 years – from the age of 24. If I can give advice to anyone suffering from diabetes that could make their life easier and if someone can give me advice as well, I would appreciate it.”

Practical and medical assistance

For a number of respondents, their primary motivation for joining was assistance with managing their diabetes. For example:

“Because my sugar is not controlled, so I need advice.”

“To gain access to more information, medical and/or psychological assistance and/or
possible support groups in and around my area.”

“Will want to know more about Type 1 and how to take of care of myself during the hyper
and hypo.”

These kinds of responses suggest both a misunderstanding of the function of the registry
and the lack of support and information for people with diabetes more generally.

Research

Approximately 54 respondents reflected on their hope that the registry would lead to improved research and/or data collection. Importantly, however, the ways in which a registry would improve research/data were linked to clear outcomes. For example:

“Improved treatment, improved budgeting, and sharing of data on Type 1 diabetes with other Type 1s.”

“For statistics and in the hopes that the government can do more for diabetics. It’s a disgrace how people with diabetes are treated at the clinics.”

In several instances, respondents saw participating in the registry and improved research as
leading to and including a ‘cure’, highlighting the unrealistic nature of expectations. For example:

“To establish a database of Type 1s in the country for research and to find a cure. Working together to fight this disease,” and

“It would help with research and development of a cure.”

It’s important that expectations of clear outcomes from research using the registry data are outlined. Likewise with the other expectations (like practical and medical assistance) – failure for them to materialize may result in research/participation fatigue.

Community:

A key finding from the responses is that many respondents are looking for a community, and see the registry as a way to achieve this. In some responses the assumption seems to be that the registry itself will act as a de facto community. For example:

“Having a register might help those who really struggle with diabetes. It is a very complicated condition and can become very lonely! Having someone asking if you are coping, might help that loneliness be less.”

In others, the underlying assumption is that the information in the registry will be publicly available and searchable.

“My daughter is 4 years old and I would like to know how many other children her age have it or even to meet other parents in the same situation as me.”

Where and how the data will be stored, and who will have access to it, is a question that also
comes up frequently.

Frustration with status quo

Respondents clearly feel a frustration with the status quo. The importance of creating
awareness about Type 1 diabetes – as opposed to Type 2 diabetes – comes out in some responses. For example:

“Currently we are lumped with Type 2 and everyone thinks diet (no sugar) will solve that.”

As does the hope that improved information would lead to legislative changes and improved
access to medication and technologies:

“The more data we have on Type 1 diabetes in South Africa, the easier it will be for major role players to assess healthcare at an appropriate level for each patient. Perhaps eventually we can use the registry to motivate national government through the DoH to make provision for a CGM (even just the flash) available to all Type 1s in SA as a basic human right like in UK, Australia and Canada.”

Comments like this speak to a general frustration with both the public and private health care systems in SA. A large part of this frustration appears to be with the costs associated with diabetes management and medical aids.

For example:

 “To create awareness about the costs linked to good diabetes care.”
 “To get support and advocacy for the latest healthcare and negotiations with medical
aids to fund this. Diabetes is an expensive disease.”
 “To hopefully create awareness so that medical aids will fund CGM and pumps.”
 “To hear about developments in treatment or reduction of costs in procuring
medication.”

Data:

A final key theme is around data. Concerns about how data would be stored and used also emerges. For example:

“Detest being tracked. Won’t serve a purpose other than targeting me,” and

“Concerns about the data and how it will be used.”

On the one hand, there’s growing concern about data privacy in SA, which may undermine efforts to recruit registry participants unless assurances are given about confidentiality, anonymity, and privacy – not to mention POPIA and the regulations around storing medical data. On the other hand, longitudinal research (asking participants to regularly and routinely provide information to the registry) often leads to participant fatigue unless there’s a clear benefit to the participant, like, for example the ability to find community or access medical assistance.

Final thoughts

Responses outline five key reasons why people with diabetes and care providers would join a Type 1 Diabetes Registry – information; practical and medical assistance; research; community; and frustration with the status quo. The varied reasons – and unrealistic nature of some of them – speak to the need to clarify the role of the registry in future research and communication.

In addition, improved understanding of the reasons why people with diabetes would choose not to join or would be unable to join are important: the practical barriers that might exist (dependent on the design of the registry) and ideological/political reasons why people may not join will be important. As will ascertaining how much data can be collected from participants and how frequently, without needing to incentivize participation.

There is plenty of food for thought here! Many thanks to Thea De Gruchy for this fascinating thematic analysis of the Type 1 Diabetes Registry survey results.

Photo by Adolfo Félix and Kelly Sikkema on Unsplash.