At the end of 2019, Sweet Life was awarded a Shuttleworth Foundation Flash Grant. These small cash grants are awarded “to a collection of social change agents, no strings attached, in support of their work.” You have to be nominated by a Shuttleworth fellow, so it was a real honour. Bridget McNulty shares how the grant has helped Sweet Life realise our ideas – so far! – this year.
Being awarded a Shuttleworth Foundation Flash Grant was an incredible way to end off 2019.
We had already had a busy year – we officially became an NPO, grew Diabetic South Africans to become South Africa’s largest online diabetes community, and helped found the Diabetes Alliance. The Diabetes Alliance brings together all the companies, organisations and associations working with diabetes in South Africa. All united for a common cause – to make diabetes a national priority. We had our first meeting with the National Department of Health in November 2019, so we felt we were poised to do great things in 2020.
The Shuttleworth grant offered us two things: confidence and freedom. Two huge things! It gave us confidence that the work we so fiercely believe in was recognised by other social change agents. This might not seem necessary, but it’s really powerful to know that what you’re working on tirelessly (and have been working on for years) is making an impact.
It also gave us freedom: the money bought us time to focus on our 2020 diabetes education project. And time is just about the most important thing for an NPO.
Diabetes in South Africa: an overview
It is widely accepted that Type 2 diabetes is the next epidemic in South Africa. According to Stats South Africa, diabetes is the number one killer of women in South Africa. Diabetes kills more people than TB, HIV and malaria combined – despite the fact that Type 2 diabetes is not a lethal disease, and is largely preventable if diagnosed early enough. Think about that for a moment. A non-lethal, preventable condition is killing more women than anything else in South Africa.
Why is diabetes so overwhelming? The most recent 2019 International Diabetes Federation
estimates for South Africa report 4.6 million adults (20-79 years of age) with diabetes; the
national prevalence was 12.8% (3.8-14.7). Of the 4.6 million people with diabetes, 2.4 million
(52.2%) were undiagnosed. 1 in 2 people with diabetes in South Africa is undiagnosed.
COVID-19 and diabetes
The diabetes problem becomes even more urgent when faced with COVID-19. Diabetes is one of the top co-morbidities for COVID-19 in South Africa and globally, with a significantly higher death toll in those who have poorly controlled diabetes.
This increased risk includes a large proportion of the population who are living with prediabetes. They are either not aware of their condition or not aware that they are at risk for diabetes. The recently released South Africa Demographic and Health Survey 2016 reports that very high proportions of women (64%) and men (66%) are prediabetic. (This was measured by an adjusted HbA1c level of 5.7%-6.4%). That means that 2 in 3 people in South Africa have prediabetes, which puts them at significantly higher risk of developing Type 2 diabetes.
The good news is that, according to WHO, 80% of cases of diabetes, 80% of heart disease and 40% of cancer could be prevented by avoiding tobacco, increasing physical activity and adopting a healthy diet. It is globally recognised that prevention of diabetes through lifestyle changes is critical and cost-effective. We need good diabetes education.
2020 diabetes education project
At the beginning of the year, we embarked on an ambitious project: diabetes education in public clinics. The National Department of Health (NDoH) asked the Diabetes Alliance to help with diabetes education. They could see that the current material wasn’t effective and that diabetes education can make a significant impact in helping people manage their condition.
Sweet Life formed a pivotal part of the task team working on this project. Our goal for the beginning of the year had been to do a study ourselves: to test out the efficacy of different methods of communication in Western Cape public clinics. What works best, print or mobile? Photos or illustrations? What kind of photos, what kind of print, what kind of mobile?
Diabetes education research
Prof. Joel Dave, head of endocrinology at Groote Schuur, pointed out that much of this research has probably already been done. So we embarked on a diabetes education research project. We read every paper or article written about diabetes education in public clinics in South Africa and neighbouring countries, and any overseas studies that could apply. We also read HIV/AIDS studies with relevance to this issue. It was brain-expanding research.
Alongside this, we interviewed every person we could find doing work in or around diabetes education in South Africa. The result is 6 months of (somewhat exhausting!) detail outlining everything to do with diabetes education in public clinics in South Africa. Here are the reports:
Many of these articles and interviews took a lot of digging to find. We have published the reports with as many links as possible, to pave the way for anyone wanting to pick up on this work in future. As a result of this research, we have also introduced academics from different institutions to each other, in the hopes that they might be able to collaborate.
Diabetes messaging that engages
One of the most surprising things to emerge from the research was the issue of health literacy. Health literacy is a huge challenge in South Africa. The health literacy of public clinic patients is approximately two grades below their literacy level. This study in Sesotho health literacy found that the materials provided at clinics were in the matric to post-graduate literacy level. The people attending the clinic had a health literacy understanding of Grade 4 to Grade 7. When we look at the current diabetes educational material, it is all pitched too high. All those pamphlets, posters and books are going to waste if they’re not being properly understood.
Most of the current materials are donated by big pharma companies (all part of the Diabetes Alliance) as part of their CSI initiatives. We discussed this health literacy issue at our February 2020 meeting. Messaging that is easy-to-understand, relevant and culturally appropriate is essential for engagement. We also discussed how the right diabetes education solution has to be something that is future-proof, i.e. digital. Posters are referred to as ‘wallpaper’ at clinics as they are often not seen by patients, who are all on their phones as they wait. The right service, available through WhatsApp, could deliver diabetes education messaging in a way that seamlessly fits into everyday life.
Where the diabetes education project is now
For those who don’t want to read through six months of reports: a summary. We have been working with Praekelt.org who developed MomConnect for the NDoH, to propose DiabetesConnect. This WhatsApp-based app would provide information to people with diabetes in an easy-to-understand way. We are looking at Type 2 diabetics who have just been diagnosed at public clinics, either in Tshwane or the Western Cape, as a pilot. The pilot would be in English, but thereafter we would translate to the five most spoken languages in South Africa. The Diabetes Alliance presented the proposal to NDoH at the end of June, and we’re waiting on the follow-up meeting this month.
COVID-19 has added an extra layer of urgency to the issue of diabetes education, as diabetes has emerged as one of the top co-morbidities. This is particularly in those with poor diabetes control. The more we can help people with diabetes manage their condition, the less risk they face.
COVID-19 parallel project
COVID-19 was certainly not on our radar at the beginning of the year! But the speed and urgency of diabetes and COVID-19 has led us to develop a library of COVID-19 diabetes info on our website. We have all the latest research, updates from one of SA’s top endocrinologists, and free resources for people with diabetes during this time.
- What do we know about COVID-19 and diabetes?
- Diabetes and coronavirus
- 12 Coronavirus precautions and tips for people with diabetes
- COVID-19 resources for people with diabetes
- 10 diabetics share how coronavirus affects their diabetes
- COVID-19 diabetes advice from a doctor
- COVID-19 diabetes update from a doctor
Diabetes food list parallel project
The only problem with the diabetes education app is how long something like that takes to develop – even a pilot. In the interim, we wanted to provide something immediately useful to people with diabetes in public clinics.
One of our research undertakings was attending a GREAT (Group Empowerment and Training) session at Symphony Way Clinic in Delft. The session was immensely helpful and practical. But it highlighted how little is known about which foods to choose and – even more specifically – in what portions. When interviewing each of the diabetes experts this year, we asked what 3 things could make a huge, immediate difference in the lives of people with diabetes in SA. Portion control came up over and over again.
Our goal with this diabetes food booklet was to make it as simple as possible. We worked closely with Pick n Pay’s dietician and with the team from GREAT to create a list of commonly-eaten foods, and then make recommendations based on that. At every stage, we simplified the concept, only including that which is absolutely necessary. What we have now is an illustrated list of which foods are good for diabetics to eat, and in what portions. There are hardly any words, except for the portion sizes and the names of the foods. It is meant to be a reference guide. A book that people can use at every meal: good quality paper, beautifully designed, easy to understand.
We are printing 15,000 copies in August, supported by Pick n Pay and Sanofi. We will distribute them to diabetic employees at Pick n Pay and in Pick n Pay Pharmacies and public clinics. The plan is to ask for feedback and iterate the design till it is truly useful. In November (National Diabetes Month) we will print many more copies or – better yet – offer it as a resource to the NDoH who can print copies for all their public clinics.
Diabetes in the media
Finally, we are working on keeping diabetes top of mind in the media, with a quarterly media and PR push. In general, diabetes is only spoken about during National Diabetes Month in November. One of Sweet Life’s mandates for the year is to bring diabetes into mainstream conversation. Our first media announcement for the year was the terrifying prediabetes stats in South Africa, and how they can be seen as an invitation for reducing the risk of developing Type 2 diabetes. This resulted in 3 radio interviews, an ENCA TV appearance and various online articles.
Our second media announcement was just released last week and centered around the #cgm4all campaign. We recently helped to form SA Diabetes Advocacy, the patient voice for diabetes in South Africa. It is an alliance of all the diabetes patient organisations in SA (including Sweet Life) so that we can all unite together to speak for diabetes.
The #cgm4all campaign is the first campaign we are supporting, run by Bete It, one of the member organisations. Sweet Life put together the press release and organised the media for the campaign. This is the first time all Type 1 diabetics in South Africa are speaking together. We are asking SA medical aids to cover life-changing diabetes tech (Continuous Glucose Monitors – CGMs). Future campaigns will be proposed by the member organisations – Diabetes South Africa, YT1 (Youth Type 1), Kids Powered by Insulin, Bete It and Sweet Life.
Halfway through 2020
It has been a busy year so far! Despite the potential derailing of COVID-19, our plans are moving forward well. We are motivated by the intense need of people with diabetes in South Africa for reliable information, community and support.
It has been a real honour being associated with the Shuttleworth Foundation – thank you!