The Dedoc° Voices reached a milestone this year at ISPAD 2021. While ISPAD is a conference for healthcare professionals, the Dedoc° team were able to sponsor participants to take part and share the knowledge they have gained under the principle of Paying it Forward. They also held their #Docday° just outside the premises in previous years and since the pandemic, #Docday° was held in association with ISPAD shortly after the conference had ended.
This year however, the Dedoc° team got the opportunity to present directly at ISPAD to the healthcare professionals and making the patient voice heard. Three speakers from around the world were selected to present under the topic of “What we wished you knew – and why”.
Dedoc° founder Bastian Hauck gave a brief introduction of Dedoc°, its beginnings and progress to speak out about the voice of people living with diabetes and expressed his gratitude for receiving the opportunity to present directly at ISPAD. He stressed the importance of including people living with diabetes in the decision making processes and introduced the hashtag #NothingAboutUsWithoutUs.
Before the Dedoc° voices speakers, Carine de Beauford, president of ISPAD, gave a short presentation introducing ISPAD and its goals and highlighted the importance of healthcare professionals listening to and adapting to their patients.
Carine de Beauford also stressed the importance of not only treating and living with diabetes, but to thrive with it too.
She asked the clinicians and healthcare professionals how much time they actually spend talking to patients and learning about what patients know and how they feel. As most people manage diabetes mostly on their own, it is even more important for healthcare professionals to listen to what patients are saying, to learn about their motivation and help them to live a full and happy life. Clinicians should no longer try to do it all themselves based on knowledge they learned a long time ago, but to actually work proactively with patients together.
Daily life in diabetes is teamwork, every member of the team is important, including the patient. Improving understanding of important factors in the patient’s life is crucial to help them with a more personalized approach.
The healthcare professionals attending the symposium were also reminded of the Dedoc° mantra: Nothing about us without us.
Next, Bastian Hauck talked about the exciting opportunities for Dedoc° of working with the British Medical Journal directly and introduced BMJ’s speaker Emma Doble.
Emma spoke about the importance of the patient voice within the healthcare profession, as patients bring insights, experiences and skills. They can help to ensure healthcare design implementations are useful and accurate.
She also praised communities like Dedoc° and how much they have to add and show what patient-led communities can bring to healthcare.
The BMJ also considered how to best promote this focus on patient involvement and began to promote articles written by patients to show powerful testimonies from which the healthcare community can learn so much from. She also urged healthcare professionals to partner with and collaborate with communities and advocates to stay up to date and learn more.
Dedoc° doesn’t just stand for type 1 diabetes however. With the centennial of insulin and all the exciting preparations to celebrate 100 years, there are other voices heard too. Those voices ask “Why are we not invited?”. The type 1 community can be a bit discriminatory and people living with diabetes who fall under the type 2, MODY, LADA categories feel excluded. Dedoc° is trying to include them all and to create a more inclusive community by ensuring people with other types of diabetes are also represented and how we talk about each other.
To share more about this topic, Dedoc°’s first speaker was introduced.
Renza Scibilia from Australia spoke to us about Language Matters.
There is a big movement, using the hashtag #languagematters, which is not only about the words we use but also about communication and the images and tone we use to talk to each other. It is time we look at and improve the way we speak about and to people living with diabetes.
The truth is – Diabetes has an image problem. We see it in the way diabetes is spoken about by the general community. Comedians use diabetes jokes in their standup routine, and there are TV cooking shows where a sugar-coated desert is often referred to as ‘Diabetes on a plate’. People ask us things like “should you be eating this?” “Can you go do that in the bathroom?” when referring to our blood sugar checks or injection in public.
But even within the diabetes community, language can make us feel stigmatized and worthless. Words like ‘compliant’ or ‘non-compliant’ can make it sound like people living with diabetes are wilful toddlers who are unwilling to follow instructions. Diabetes, however, is all about us managing our own condition. To be told by a diabetes team that sees us barely a day a year that we are non-compliant is very judgemental, especially when for the rest of the year we are on our own.
It isn’t just how others talk to us about diabetes, language is also important in how we refer to ourselves. There is no right answer; diabetic or person living with diabetes – we can use whichever term we are comfortable with.
How did the language matters movement start?
In Australia, it started about 10 years ago that people living with diabetes started to acknowledge that language matters and that we can feel judged.
The movement to improve our language was accepted by the community and later documentations were drawn up. More and more wonderful research followed on how we can use words to empower people and how important it is to be mindful of how we use words and language in general.
This has also helped to reinforce what people living with diabetes have been saying. Language has a huge effect on the psychological side of diabetes management and the effects on society at large.
Renza then spoke about how language impacts herself and what she hears from other people in the community. The image problem that diabetes has, due to the way people with diabetes and others have communicated about it, can also lead to diabetes getting less funding. In Australia, funding for diabetes research has dropped about 30% in the last few years. People often think that diabetes is self-inflicted due to bad dietary habits and are less likely to donate from their pockets. This is the effect that language can have on the community and what image is being portrayed to the wider public about diabetes.
This discussion was really amazing and there were several comments from healthcare professionals discussing language within the clinics. Hopefully with more research based on this, there will be a gradual change in how healthcare professionals talk to people living with diabetes and learn to encourage them more.
Next up was one of the core topics of #Docday°
Stephanie Haack talked about Peer Support in the Diabetes World and why communities and team support matters.
Stephanie explained that while we may see a healthcare professionals 4 days a year, we still need support and help during the rest of the year. She reached out to her community and instagram to find out what peer support meant to them. A lot of people didn’t know they needed peer support at the beginning, but soon realised the importance of having someone to talk to.
A lot of community projects originated in the real, offline world, and there are still many offline community events happening now despite Covid-19. Projects such as Christmas card snail mail project where people living with diabetes send each other Christmas cards.
For Stephanie however, the online world with its social media is where she feels most at home in regards to diabetes community support. Social media, patient networks and different platforms help people living with diabetes connect wherever they are in the world. Countless online meetups also help to show what peer support can look like.
There are issues to be considered as well though. We are essentially sharing our health data online for the world to see, so there are concerns in regards to security and privacy. Most people joining communities are not medical professionals, so we shouldn’t be giving each other medical advice. There is also the issue of people behaving badly or even maliciously online, while comparing ourselves, our bodies or blood sugar trends to other people on social media can make us feel inadequate. That’s why it is good to not only share the positive days with diabetes, but to share both the highs and lows, to set more realistic expectations of what living with diabetes can be like and that it is okay to have bad days. There is also a lot of discrimination happening in regards to different types of diabetes, ethnical and racial backgrounds, so more work is still to be done to create safe spaces for everyone to share and connect.
It is still important to connect to other people and to have the opportunity to share and see how other people living with diabetes are managing their lives.
Having a community can not only improve the good times, it also helps us during tough times and makes us feel like we are in this together. People sharing their stories online can help us feel less alone and more connected with other people understanding our daily lives and the struggles we may face.
The next level of peer support is advocacy, speaking out for the people who need help, working on changing stigma and helping each other. One such project is the Nightscout project with #WeAreNotWaiting, showcasing what can be done when the community comes together to work on what is needed.
rove medical outcomes as well as increase quality of life. She encourages everyone to get on board and make use of peer support, as we can all help and support each other.
This was a wonderful presentation of the power of social media and peer support, which is especially applicable during this pandemic.
After Stephanie’s presentation, Bastian talked about the meaning of #Docday° as a platform for others to come forward and share their experiences. By going online, the virtual #Docday° was able to include voices from all other the world. The next speaker was one of these voices.
Tinotenda Dzikiti from Zimbabwe talked to us about Access to Diabetes Care in Zimbabwe and other parts of Africa.
Around the globe today 1 in 2 people cannot afford access to insulin and people around the world are dying because they cannot afford or get access to diabetes care, technology and insulin. In Africa, access to insulin is also an issue for many countries and in Zimbabwe, diabetes care is becoming a major public health issue.
Diabetes education is rarely talked about in Africa and professional advice is often not a priority given the high cost of consultation.
Insulin supplies have recently been increased but access is still difficult, especially in rural areas where people often travel for 200km hoping to find insulin. Often they have to return empty-handed.
While insulin is readily available in the cities, it is still very difficult to get insulin supplies in more rural areas. As a lot of people cannot afford the newer, modern insulin they have been prescribed, they often need to switch back to old insulin regimens.
There is a wide variety of prices for insulin in Africa, and analogue insulin is three times as expensive as human insulin, because it is supplied in pens that can only used for about a week, therefore people prefer the human insulin or pre-mixed vials as they last longer. Due to the high costs, people often need to leave without being able to get the insulin they need. They end up rationing their insulin and only injecting once a day or going for days without any insulin, hoping to find more money by the following week to get more insulin. Some people and even children are having to switch from using insulin to using Metformin (a drug to increase insulin sensitivity in type 2 diabetes to lower blood sugar) to try and survive despite the lack of access.
Tinotenda then moved on to talk about diabetes education in Africa. Around 60% of adults are unaware of their condition and need to learn about their diet, complications and how to adjust insulin dosage. A lot of people are unaware of Diabetic Ketoacidosis (DKA) but are found either going into DKA or coming out of DKA.
In regards to healthcare, the pandemic made everything a lot worse. While everyone should have access to hospital care and specialists if needed, the healthcare system was heavily compromised during covid-19 and only people with emergencies were able to see a doctor. The nurses had no detailed knowledge of what diabetes is.
Doctors are also failing to highlight the implications of switching from insulin to metformin, but they are following their patient’s plea, allowing the switch even for people with type 1 diabetes.
Proper medical care and advice is available in mostly private hospitals, however the cost is so absurd, so not many people are able to get the help that they need.
Tinotenda then spoke about diabetes technology in Africa, especially in regards to blood sugar monitoring. It is very difficult to talk about glucometers, cgms and insulin pumps due to the high cost. People are barely able to afford insulin, they cannot buy the extra supplies like glucometers, test strips, ketone strips or new syringes. People have to make a choice between affording insulin and affording diabetes supplies.
Millions of people are not even aware of their HbA1c, but the diabetes online community has started to talk more about time in range (TIR). Not many people are talking about cgms or insulin pumps, as not many people can even afford them.
Despite the difficult situation, Tinotenda highlighted several organisations and programs who are working hard to help with insulin supplies, especially for children living with diabetes.
He also compared the situation to Botswana, where healthcare is completely free. As such, the organisations are able to focus more on education, advocacy and improving quality of life, since access and affordability are not an issue there.
As a Diabetes Online Community, there will only be relief when people know they will be able to access the next dose, pen or vial of insulin as needed. There can only be confidence when they know that their healthcare professionals really know what they are talking about and know what diabetes really is. Lastly, the world would become a better place when #insulin4all becomes a reality.
Tinotenda ended his diabetes by thanking everyone and encouraging them to unite for diabetes.
After this very powerful presentation, #Docday moved on to a few questions for the speakers.
The first question was in regards to healthcare education in university and where we should start to help aspiring doctors to change the language they are using in regards to their patients.
Renza explained that she talked to people who are in their first year of studying healthcare and shared with them different ways of how it can be done right. Learning early during their studies is easier than getting existing healthcare professionals to unlearn their expression, to catch them early before they start bad language habits in regards to how the speak to and about people living with diabetes. She also pointed to great resources and statements that can be used, documents that were drawn up such as one produced by NHS England as well as France. These can form a good guide to start to think more about language and asking people to be mindful of how they talk. Learning to reframe language is best learned as early as possible in their medical training.
The second question was in regards to bullying on the internet and how we can help to control or prevent this from happening.
Stephanie agreed that there is a problem with people behaving badly online or are just not in it for the greater good and instead attend for personal gain or amusement. In closed forums there can be admins and monitors, a lot of online places however are unregulated, which can be both positive and negative.
Stephanie encourages kids and parents to connect with other people online, but to have a close look at what is happening and to protect each other.
Bastian added that good online communities are very much self-policing too. Should one person share a controversial statement, fake news or bully another member, they would immediately be jumped upon by the larger community who have the greater good at heart.
Prompted by a question about Dedoc for kids, Bastian talked briefly about the diaversary project in Germany, where a blue circle pin is sent to kids on their first diaversary, and they are hoping to roll it out to other countries in the future.
A question in regards to insulin versus metformin in Zimbabwe was explained by Tinotenda. As insulin is so expensive, people try to use metformin as they are not fully aware of the consequences or complications. Most people in Zimbabwe are people living with type 2 diabetes, rather than type 2 and since they do not fully know how the drug is used, and the healthcare professionals not giving them a lot of advice, they end up just switching as it is cheaper.
Next, Bastian asked Emma from the British Medical Journal what the typical readership of the BMJ would like to ask on the 3 topics that were presented today, as well as the typical topics at other #Docdays.
Emma then asked what healthcare professionals can do right now to use the right language and to be sure they are using the appropriate language with their patients.
Renza’s advice was to ask the patient, how they like to be referred to an to tell them that if they as the healthcare professionals say something offensive, that the patient lets them know, so that there can be an open dialogue between healthcare professionals and patients.
In regards to peer support, Emma said that healthcare professionals are often nervous about sending patients to others for peer support, in case they recommend something that is wrong or bad for the patient.
Stephanie replied that if healthcare professionals are clearly there for their patients and are happy to answer questions and give a lot of information, there is no need for patients to go to the community for medical advice. With medical advice being covered, people will be able to focus more on the lifting up experience, mental health or friendship of the online community.
It is important that when people seek out a community they know what they are looking for, they know how to navigate medical advice they encounter and that they have a healthcare provider they can turn to for any questions they have. The community is then more for emotional support.
Emma’s last question was in regards to what healthcare providers as a community can do to improve access and education for people living with diabetes in Africa.
Tinotenda encouraged them to come together, to unite as a community and to demand access and education together.
With this, Dedoc° Docday at ISPAD ended. It was incredibly insightful to learn from these powerful presentations and I hope a lot more healthcare professionals will take note of what has been shared here by the Dedoc° voices.
One comment at ISPAD came up and said a community like Dedoc° is a brilliant initiative and should be available for other health conditions.
This just shows the power a community can have, to not only support each other but actually get medical professionals to listen more and focus not only on our condition, but also on our lives as people.
Docday° was incredible as ever, thank you very much to all the speakers who took part in this event.
A recording can still be viewed on the Dedoc° Cimmunity Facebook page here.