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When the clock ticked over into 2025, I had no intention of even considering coming up with New Year’s resolutions that would shape my new year. But with all that is going on in the world, I’ve given myself permission to reconsider and do all I can to stick to it. And I’m encouraging everyone I know to make the same resolution.
And that resolution is to do a health literacy check-up and to actively pushback against misinformation. There has never been a time when being health literate is more important. I thought that during the COVID years as we received a daily onslaught of misinformation about vaccines, bogus treatments (bleach, anyone?), outright lies (“it’s just a cold”) and conspiracy theories (“BigVax is behind it all”). But how naïve I was. Those days seems like just a warm-up for what is happening today.
I’m in Australia, but I don’t for one moment think we are immune to the madness sweeping the world. But if you are shaking your head and laughing a little when RFK Jr spews his anti-vax, anti-fluoride, anti-science agenda, or Dr Oz uses his latest pseudoscience claim as the foundation for whatever supplement he is selling, you’re not grasping the seriousness of what is going on. Before we Aussies get too smug, we should remember our own backyard isn’t devoid of charlatans, and it’s only a matter of time before someone like Pete Evans is taken seriously in public health discussions. Think I’m over-reacting? He already made a run for the senate. How long before a conservative party sweeps him into their fold?
I think it’s safe to say that we have moved beyond this sort of misinformation being a fringe issue amongst ‘crunchy’ parents, trad wives and ‘wellness’ influencers. And Gwyneth Paltrow.
Health misinformation is deliberate and it’s mainstream, and protecting yourself against it isn’t optional – it’s essential.
Up until now there have been guardrails in place to protect public health. Boards and regulatory agencies have existed to ensure medical safety and provide us with confidence that there are processes in place to determine the safety of drugs, devices, healthcare programs. Guidelines are based on robust and rigorous research and are developed using evidence and expert consensus. (Side bar: Have people with lived experience been involved in these practises? Absolutely not enough. Could this be better? Absolutely yes.)
Critical thinkers understand that science is not static. We understand that science changes as evidence evolves. We also understand that we don’t have to follow guidelines blindly. We should understand and consider them. And then use them to make informed health choices. I repeatedly say this to anyone who questions off label healthcare (my favourite kind of healthcare!): ‘I understand guidelines and learn the rules so I can break them safely’. That’s what being health literate does – it gives me an understanding of risks and benefits to make decisions about my health and what works best for me. And it gives me confidence to spot and push back on misinformation.
Critical thinkers also know that questioning medical advice is not the same as embracing conspiracy theories. It doesn’t mean throwing the baby out with the bathwater as you hastily reject modern medicine in favour of snake oil salespeople. It certainly doesn’t mean denying the effectiveness of a vaccines. And it doesn’t mean trusting Instagram wellness influencers.
More than ever, now is the time to do some questioning – to question who is spreading health information and consider their motives. What are they selling? (Case in point: Jessie Inchauspe who offensively calls herself ‘Glucose Goddess’ while selling her ridiculous ‘Anti Spike’ rubbish as she spreads fear about perfectly normal glucose fluctuations in people without diabetes). And a question that right now should be front of everyone’s mind: What power grab is behind the way someone is positioning themselves as an oracle of health information?
This post is about health literacy in general, but because this blog is called ‘Diabetogenic’ and I have diabetes, most people reading will be directly impacted by diabetes. And if there is any silver lining in this shitshow, it’s this: We’ve been dealing with health misinformation about our condition for decades, so in some ways, we’re probably ahead of the curve. We’ve had to wade through the myriad cures and magic therapies, the serums and pseudo-therapies. And the cinnamon – so much cinnamon! We’ve been standing up for science, challenging misinformation, and ensuring that diabetes health therapies are based on evidence, not fairytales. We’ve expected truth in our healthcare. It’s seemed the normal thing to do. Now it feels like a radical act to be a critical thinker.
We are a crucial point because health is being weaponised more than ever. Someone told me the other day that my lane is diabetes and health, and I should leave politics out of it. It’s laughable (and terrifying) to think that anyone doesn’t understand that health is political. It always has been. And even more so right now. We are seeing in real time political figures (and rich white men who own electric car companies) weaponise health misinformation for their own agendas, and scarily people are listening to them. They are elevating unqualified voices and aligning with conspiracy theorists, giving dangerous misinformation legitimacy. (And if you think that it’s all eerily familiar, you’re right. It’s already happened with climate change.)
Your radical act is to be smarter, to be more critical, to question sources and motives; follow reputable sources, don’t share viral posts before fact checking (Snopes is super useful here). Don’t reject credible advice and information in favour of conspiracy theories. Stack your bookshelves with books by qualified experts (I’d recommend starting with Jen Gunter’s holy trinity – The Vagina Bible, The Menopause Manifest and Blood and Emma Becket’s You Are More Than What You Eat), including lived experience experts who base their healthcare on legitimate evidence. Follow diabetes organisations like Breakthrough T1D (JDRF in Australia) for research updates and community efforts and be smart about which community-based groups you join. If moderators are not calling out health misinformation, I’d be questioning just how the group is contributing to diabetes wellbeing.
We know knowledge is power. But that knowledge base has to be grounded in fact, not fiction. Health literacy is critical because misinformation isn’t going anywhere, and neither are the people pushing it for profit and power. My resolution is to sharpen my critical thinking skills, ask questions, and refuse to let bad science set us backwards and cast a dark shadow over the health landscape. Who knew something so fundamental could be such a radical act?
Colour me unsurprised they couldn’t back up their claim with evidence.
Last week, at the ISPAD Meeting in Lisbon, I was lucky enough to catch up with remarkable diabetes advocate Jazz Sethi and together, we launched a new resource about #LanguageMatters and women with diabetes. Jazz and her team from Diabesties conceived this idea and worked with a number of women in the diabetes community to bring this resource to life and add it to the ever-growing stable of #LangaugeMatters resources. I was one of those women.
So, why do we need a specific document highlighting the challenges faced by women with diabetes, and how language can be used to help overcome these challenges?
Let’s talk about gender bias in healthcare.
Anyone who has even a mild interest in healthcare knows that gender bias is very real, and women do indeed face specific challenges. The situation is worse for women from different backgrounds, sexual orientations and gender identities.
This was the reason behind the International Diabetes Federation focusing World Diabetes Day activities on women and children back in 2017.
Here is just some of the information from that campaign, explaining issues faced by women:
- As a result of socioeconomic conditions, girls & women with diabetes experience barriers in accessing cost-effective diabetes prevention, early detection, diagnosis, treatment & care, particularly in developing countries.
- Socioeconomic inequalities expose women to the main risk factors of diabetes, including poor diet & nutrition, physical inactivity, tobacco consumption and harmful use of alcohol.
- Stigmatisation & discrimination faced by PWD are particularly pronounced for girls & women, who carry a double burden of discrimination because of their health status & the inequalities perpetrated in male dominated societies.
- These inequalities can discourage girls & women from seeking diagnosis and treatment, preventing them from achieving positive health outcomes.
Beyond diabetes, and more generally in the healthcare world, women’s health concerns are frequently denied, minimised, ignored or not believed. Women are gaslit into believing that symptoms are not real, pain is imagined and that we are overreacting. These attitudes can have serious consequences. Here’s just a sprinkling:
- This year, findings of the Australian-first #EndGenderBias survey found 2 out of 3 women experience discrimination in healthcare.
- A Danish study of 6.9 million people showed that diagnoses for diabetes came four-and-a-half years later for women than men; cancer is diagnosed in women 2.5 years after it is diagnosed in men.
- This World Economic Forum article about the women’s health gap highlights how far more women than men are not diagnosed for common health conditions.
- This McKinsey Report showed that when it comes to gender-specific health conditions, diagnosis rates differ. Eight out of ten women are undiagnosed with menopause, and six out of ten are undiagnosed with PCOS. Meanwhile, only three out of ten men with erectile dysfunction remain undiagnosed.
- Want more? Okay, here’s something from the UK showing that women are underdiagnosed, undertreated and under-represented in clinical trials directed at management strategies for cardiovascular disease, making their results less applicable to this subset.
Pivoting back to diabetes, this from a Lancet editorial:
- Compared with men, women with diabetes are disproportionately affected by depression and anxiety & have a lower quality of life, which can negatively affect attitudes towards self-management &, in turn, disease outcomes
- Women with type 1 diabetes have a 40% higher excess risk of premature death than men with the disease, and those individuals with type 2 diabetes have up to 27% higher excess risk of stroke and 44% higher excess risk of coronary heart disease.
- Women from high income countries are less likely than men to receive the care recommended by guidelines
And a recent study published out of Canada reported:
- Women with diabetes may face additional challenges related to gender-based discrimination and its impact on depression symptoms
- Stigma was more significantly perceived by women compared to men
None of this will be a surprise to anyone who is familiar with gender bias in medicine. Actually, none of this will be remotely surprising to anyone who has listened women share their experiences in healthcare.
And so, anything that can be done to address this is surely a good idea, right?
Well, IDF Europe thinks so! In this article, one of their recommendations for addressing gender equality in diabetes is: The development of specific approaches to diabetes prevention, education and care for women and girls. In other words, targeted, specific, tailored information is frequently needed to ensure that messages get through and issues are addressed.
Which brings us full circle to the #LanguageMatters and women with diabetes resource launched last week. A resource specifically for women with diabetes, by women diabetes. It identifies the issues and provides practical solutions to address them and shines a light on gender bias in diabetes care, asking that women are treated with respect and all our concerns are believed.
You’ll see that nowhere in this article have I denied that men with diabetes face challenges, or that men with diabetes could benefit from focused information and resources. And the new language resource for women doesn’t say that either. And yet, that was an accusation on the cesspit that is Twitter after a video was tweeted, where Jazz and I excitedly launched this new resource. Because ‘whataboutism’ is never far away.
Diabetes MattHERs has been widely shared on social media, with overwhelmingly positive responses. But here’s the kicker: the only backlash? Aimed at a woman. Men who shared it? Nothing but praise. Funny how that works. It’s almost as though there’s a different standard for women. Perhaps… I don’t know… could it be bias?
I’ve been wondering how different diabetes would be if all we needed to worry about was the actual tasks of doing diabetes. ‘All’ doesn’t sound right, because I know it would certainly still be a lot. Diabetes tasks are many and constant. But if the noise disappeared and with it all the other factors that made diabetes more difficult, how much easier would it be?
If the gatekeeping disappeared and we could have access to what we need without having to jump through hoops to prove ourselves worthy, wouldn’t that make it easier?
If we had access to the best technologies and drugs when we need them, and could change as we needed, wouldn’t that make it easier?
If the judgement disappeared and we weren’t worried about how others perceived our efforts, wouldn’t that make it easier?
If the stigma vanished and we weren’t concerned about what others thought about diabetes in general, or felt that they had the right to comment on our diabetes, wouldn’t that make it easier?
If the shame and the blame wasn’t there, and we didn’t have the fingers pointing to us for getting diabetes or our diabetes outcomes, wouldn’t that make it easier?
If scare tactics were no longer deployed and we weren’t constantly being warned about all the things that could go wrong and how, if they did, it was our fault, wouldn’t that make it easier
If the fear arousal disappeared along with the numbers warning us that diabetes increased our chances of getting everything bad in the world or that we were burdening the health system, wouldn’t that make it easier?
If the not believing disappeared and we were listening to and believed and respected, so we didn’t feel that we were begging for what is even just basic care, wouldn’t that make it easier?
If the minimising of how we felt and what we were experiencing stopped, wouldn’t that make it easier?
If the grading A1Cs disappeared, so we weren’t being told that we were failing diabetes, or acing it, or oscillating between the two, wouldn’t that make it easier?
If mental health care was diabetes care and diabetes care always included mental health care, wouldn’t that make it easier?
If the idea that someone needed to speak for us and ‘be our voice’ was replaced with people with diabetes being platformed and amplified instead of silenced, wouldn’t that make it easier?
If peer support was routinely encouraged and peer-led education was normalised, wouldn’t that make it easier?
If the language around diabetes fostered attitudes of care and support, rather than bias and battles, wouldn’t that make it easier?
If claims of community engagement were real instead of nothing more than window dressing, wouldn’t that make it easier?
If we traded in hope rather than doom, and didn’t position diabetes as a battle or never-ending exhausting fight, wouldn’t that make it easier?
Because as it stands, diabetes is hard enough, but all the other things make it even harder. But the good news is that these things are often simple enough to address, simple enough to remedy, simple enough to change.
I do wish that these were the things that were front of mind when strategies developed, campaigns designed, and policies changed. That’s actually an easy part. When people with diabetes drive the diabetes agenda, everything is better. And easier for us.
So, ask yourself, are you standing in the way of making it easier for us?
So often, there is amazing work being done in the diabetes world that is driven by or involves people with lived experience. Often, this is done in a volunteer capacity – although when we are working with organisations, I hope (and expect) that community members are remunerated for their time and expertise. Of course, there are a lot of organisations also doing some great work – especially those that link closely with people with diabetes through deliberate and meaningful community engagement.
Here are just a few things that involve community members that you can get involved in!
AID access – the time is now!
It’s National Diabetes Week in Australia and if you’ve been following along, you’ll have seen that technology access is very much on the agenda. I’m thrilled that the work I’ve been involved in around AID access (in particular fixing access to insulin pumps in Australia) has gained momentum and put the issue very firmly on the national advocacy agenda, which was one of the aims of the group when we first started working together. Now, we have a Consensus Statement endorsed by community members and all major Australian diabetes organisations, a key recommendation in the recently released Parliamentary Diabetes Inquiry and widening awareness of the issue. But we’re not done – there’s still more to do. Last week I wrote about how now we need the community to continue their involvement and make some noise about the issue. This update provides details of what to do next.
And to quickly show your support, sign the petition here.
Language Matters pregnancy
Earlier this week we saw the launch of a new online survey about the experiences of people with diabetes before, during and after pregnancy, specifically the language and communication used around and to them. Language ALWAYS matters and it doesn’t take much effort to learn from people with diabetes just how much it matters during the especially vulnerable time when pregnancy is on the discussion agenda. And so, this work has been very much powered by community, bringing together lots of people to establish just how people with diabetes can be better supported during this time.
Congratulations to Niki Breslin-Brooker for driving this initiative, and to the team of mainly community members along with HCPs. This has all been done by volunteers, out of hours, in between caring for family, managing work and dealing with diabetes. It’s an honour to work with you all, and a delight to share details of what we’ve been up to!
Have a look at some of the artwork that has been developed to accompany the work. What we know is that it isn’t difficult to make a change that makes a big difference. The phrases you’ll see in the artworks that are being rolled out will be familiar to many people with diabetes. I know I certainly heard most of them back when I was planning for pregnancy – two decades ago. As it turns out, people are still hearing them today. We can, and need to change that!
You can be a part of this important work by filling in this survey which asks for your experiences. It’s for people with diabetes and partners, family members and support people. They survey will be open until the end of September and will inform the next stage of this work – a position statement about language and communication to support people with diabetes.
How do I get involved in research?
One of the things I am frequently asked by PWD is how to learn about and get involved in research studies. Some ideas for Aussies with diabetes: JDRF Australia remains a driving force in type 1 diabetes research across the country, and a quick glance at their website provides a great overview. All trials are neatly located on one page to make it easy to see what’s on the go at the moment and to see if there is anything you can enrol in.
Another great central place to learn about current studies is the Diabetes Technology Research Group website.
ATIC is the Australasian Type 1 Diabetes Immunotherapy Collaboration and is a clinical trials network of adult and paediatric endocrinologists, immunologists, clinical trialists, and members of the T1Dcommunity across Australia and New Zealand, working together to accelerate the development and delivery of immunotherapy treatments for people with type 1 diabetes. More details of current research studies at the centre here.
HypoPAST
HypoPAST stands for Hypoglycaemia Prevention, Awareness of Symptoms and Treatment, and is an innovative online program designed to assist adults with type 1 diabetes in managing their fear of hypoglycaemia. The program focuses on hypoglycaemia prevention, awareness of symptoms, and treatment, offering a comprehensive range of resources, including information, activities, and videos. Study participants access HypoPAST on their computers, tablets, or smartphones.
This study is essential as it harnesses technology to provide practical tools for better diabetes management, addressing a critical need in the diabetes community. By reducing the anxiety associated with hypoglycaemia and improving symptom awareness and treatment strategies, HypoPAST has the potential to enhance the quality of life for individuals with type 1 diabetes.
The study is being conducted by the ACBRD and is currently recruiting participants. It’s almost been fully recruited for, but there are still places. More information here about how to get involved.
Type 1 Screen
Screening for T1D has been very much a focus of scientific conferences this year. At the recent American Diabetes Association Scientific Sessions, screening and information about the stages of T1D were covered in a number of sessions and symposia. Here in Australia. For more details about what’s being done in Australia in this space, check out Type 1 Screen.
And something to read
This article was published in The Lancet earlier in the year, but just sharing here for the first time. The article is about the importance of genuine consumer and community involvement in diabetes care, emphasising the benefits and challenges of ensuring diverse and representative participation to meet the community’s needs effectively.
I spend a lot of time thinking a lot about genuine community involvement in diabetes care and how people with diabetes can contribute to that ‘from the inside’. And by ‘inside’ I mean diabetes organisations, industry, healthcare settings and in research. I may be biased, but I think we add something. I’m grateful that others think that too. But not always. Sometimes, our impact is dismissed or minimised, as are the challenges we face when we act in these roles. I don’t speak for anyone else, but in my own personal instance, I start and end as a person with diabetes. I may work for diabetes organisations, have my own health consultancy, and spend a lot of time volunteering in the diabetes world, but what matters at the end of the day and what never leaves me is that I am a person living with diabetes. And I would expect that is how others would regard me too, or at least would remember that. It’s been somewhat shocking this year to see that some people seem to forget that.
Final thoughts…
Recently when I was in New York at Breakthrough T1D headquarters, I realised just how many people there are in the organisation living with the condition. It’s somewhat confronting – in a good way! – to realise that there are so many people with lived experience working with – very much with – the community. And it’s absolutely delightful to be surrounded by people with diabetes at all levels of the organisation – including the CEO. But you don’t have to have diabetes to work in diabetes. Some of the most impactful people I’ve worked with didn’t live with the condition. But being around people with diabetes as much as possible was important to them. It’s really easy to do when people with diabetes are on staff! I first visited the organisation’s office years ago – long before working with them – to give a talk about language and diabetes. One of the things that stood out for me back then was just how integral lived experience was at that organisation. From the hypo station (clearly put together by PWD who knew they would probably need to use the supplies!) to the conversations with the team, community was in the DNA of the place. As staff, I’ve now visited HQs a few times, and I’ve felt that even more keenly. Walking through the office a couple of weeks ago, I saw this on the desk of one of my colleagues and I couldn’t stop laughing when I saw it. IYKYK – and we completely knew!
DISCLOSURES (So many!)
I was part of the group working on the AID Consensus Statement, and the National AID Access Summit that led to the statement.
I am on the team working on the Language Matters Diabetes and Pregnancy initiative.
I was a co-author on the article, Living between two worlds: lessons for community involvement.
I am an investigator on the HypoPAST study.
My contribution to all these initiatives has been voluntary
I am a representative on the ATIC community group, for which I receive a gift voucher honorarium after attending meetings.
I work for Breakthrough T1D (formerly JDRF).
It’s never hard to find a source of diabetes stigma. Because sadly, it’s all around us. And right now, the source seems to be much of the discussion about the report from the Australian Parliamentary Inquiry into Diabetes.
Yes, I was very excited about the report last week when I was writing about the recommendations and accompanying content about increasing access to pumps and AID systems. That was incredible news, and it was terrific to see that the community-led efforts were met with such a positive outcome.
But the messaging more broadly hasn’t been so great and it’s very disappointing.
Disappointing, but not surprising really. After all, the inquiry was for diabetes and obesity. Last week, I said that people with T2D deserve the same attention as people with T1D when it comes to advocacy efforts and campaigns. Well, so do people living with obesity. When the inquiry was first announced, I remember reading through its terms of reference and feeling my heart sink. These are two separate and equally important health issues that need focused attention. And within that, diabetes itself comprises different types; again, all equally important and requiring specific attention.
But instead of giving diabetes the attention it deserved with an inquiry purely focused on highlighting what is needed to improve outcomes for those of us living with the condition and enhancing the health system to better serve us, we were given an inquiry that conflated two separate and significant health conditions. Something was going to get lost in this. And it seems that is diabetes.
Since the report was launched on Wednesday, a lot of media coverage has focused on one specific recommendation: the sugar tax. That was what was on the front page of The Australian, a segment on the Project and in a number of radio interviews. Also mentioned in this coverage was the recommendation about junk food advertising to children. As you can imagine, the commentary from the community has been pretty horrid and completely misinformed. If ever there was a time for not reading the comments, this is it.
I completely agree that a sugar tax is a good idea and have been saying so for years. I also believe that junk good advertising should be banned completely, especially for children, starting with TV and online advertising and extending to sponsorship of children’s sporting activities. Again, I have been involved in initiatives involving this for years. One of the reasons these measures are important is that they make healthier choices more accessible, which can reduce the risk of people developing obesity. And yes, obesity is a risk factor for T2D. However not everyone who is obese will develop T2D and not everyone who has T2D is obese. Yet this nuance is missed completely with simplistic messaging and grouping the two together.
And this nuance is important. As is pointing out that obesity is also a risk factor for many other conditions as well such as several types of cancer, liver disease, heart attack and stroke, high blood pressure, high cholesterol, osteoarthritis, sleep apnoea, mental health conditions, fertility problems and pregnancy problems. Not only T2D, so why is it included in an Inquiry about diabetes?
I shouldn’t be surprised by the media missing the mark completely, but that doesn’t mean that it doesn’t anger and upset me. Because efforts can be made to try to minimise harm and stigma from misreporting. I was asked to contribute to a media release this week about the AID work and I made it very clear that I would not be involved in anything where messaging could be seen as stigmatising. I provided a copy of language position statements and asked to see the release before it went out to make sure that it all aligned. I pointed out to the PR agency that I would publicly call out any media that came from this release if it was in any way stigmatising about any type of diabetes. Sadly, I don’t think there has been that level of care across PR and media groups. Without that care and attention the stigmatising tropes about diabetes, in particular T2D, are in overdrive.
But it’s not just the media. In the report itself, there is this statement: ‘There is a huge burden being placed on health resources by people with Type 2 diabetes’, a statement that clearly blames people with T2D for needing to use our underfunded, under-resourced, understaffed healthcare system. Absolutely no recognition of non-modifiable risk facts or social determinants of health. More stigma. More misinformation. More throwing people with T2D under the bus. And this impacts on all types of diabetes, whether we like it or not.
I really wish that as we are all tripping over ourselves to highlight this Inquiry report, we also stop to think about the messages about diabetes we are setting free into the world. So far, very little of what I have seen hasn’t made me cringe. Far too much has been stigmatising and harmful. We all have a role to play in ensuring that we do not contribute to diabetes stigma, especially when participating in commentary about and the media circus of a new shiny report being launched.
The #dedoc° symposium kicked off ATTD 2024 in the most powerful way. Four community advocates from across the globe presented on a variety of topics including access to insulin during humanitarian crises, access to diabetes care and technologies in low income settings, accessibility of technology for people with diabetes also living with disabilities, and access to research findings. You can hear the brilliant talks from #dedoc voices Leon Tribe, Tinotenda Dzitiki, NurAkca and Asra Ahmed here.
During the panel discussion, there was an important discussion about how and why it is critical for people with diabetes to be included in all conversations about diabetes. Meaningful consultation is the golden ticket here, and there were some valuable comments and suggestions about how that happens. Someone asked the question about reimbursement for lived experience expertise, an often ignored issue when it comes to people with diabetes being involved in research, programs, committees and anything else that takes our time. Our unique perspective cannot be provided by anyone else, and yet there is rarely budget to cover the costs of our participation. Sadly, it’s not routine to offer payment for our time, instead we are often made to feel that we should be grateful for a seat at the table. It’s worth reminding those who don’t value us in a financial way that WE ARE THE TABLE and without us, there wouldn’t be a place setting for anyone else.
It was clear from the conversation that diabetes advocates – even those sitting on stage at International scientific conferences – find it difficult to ask for their valuable expertise and time to be reimbursed.
I jumped off stage and made a bee line for Jazz Sethi. We do this thing at conferences that I’ve started referring to as the ‘Jazz and Renz conference special’. (You can see previous efforts here and here.) Within five minutes we’d hatched a plan for our next project, and today, we’re so excited to share it. It was clear that we need some ‘Rules of Engagement’ that provided a clear and easy way for people with diabetes and those seeking to work with us to understand not only why engagement and consultation is essential, but why it’s also essential to pay for our time.
It’s not just about reimbursement though. It’s also about recognition for that work in a multitude of ways including being included as a co-author on publications, included on programs giving presentations and having our expertise acknowledged as just as important as all other diabetes stakeholders.
And so, here are some simple guidelines that can be used by people with diabetes when working with organisations, researchers, healthcare professionals, industry and anyone else who wants out expert knowledge. Use them in your discussions with anyone who invites you to be involved in diabetes work. Print them out and take them with you when you’re meeting with anyone running a project or convening an advisory group. Share them in your networks so as many people as possible can use the information to guide discussions about ensuring our value is truly acknowledged. We hope that this will make those discussions just a little easier.
And for those who wish to work with us, have a read. If you still think that our time isn’t worth your budget, or our expertise worth real recognition, then it can only be considered that you are doing the very least to include people with diabetes. That’s tokenism. We’re not here for that anymore.
Disclosure
I was an invited speaker at ATTD 2024 where I presented on the T1D Index in my capacity as Director Community Engagement and Communications in the Global Access Team at JDRF International. I also chaired a session on access to research. ATTD covered my registration costs. My travel and accommodation were covered by #dedoc° where I am Global Head of Advocacy. I chaired the #dedoc° symposium at the conference.
Diabetes stigma is a hot button topic in the diabetes world. It has been for some time. I wrote just last month how stigma was one of the most talked about issues at ADA. That week, we also launched an Open Letter from the Diabetes Community, asking health professionals to join us in our call to stop diabetes stigma.
And behind the scenes, for all of this year, another exciting, BIG, project has been hatching and I’m so excited to share it today.
Earlier this year, in an unprecedented show of unity and determination, a group of 51 experts from 18 countries joined forces to pool our lived, research and clinical experience to address diabetes stigma and discrimination. Together, we’ve reviewed the scientific evidence and established an international consensus on 49 Statements of Evidence and Recommendations. The full report on this review has been submitted and is currently under review.
Excitingly, the group also reached a consensus on a Pledge dedicated to bringing an end to diabetes stigma and discrimination. And that’s where you come in! Everyone can sign to show your commitment stop the ingrained negative judgments, stereotypes, and prejudices that influence attitudes about diabetes, and contribute to the stigma so many of us face. This isn’t just for the community. We know there is sometimes an echo chamber as we say the same things to each other, over and over. We also know that while diabetes stigma is indeed prevalent within our community, we also need to tell the story of its harm outside the diabetes world.
Well, here’s an easy way to do both. Please sign the pledge and share details across your social platforms. You can sign as an individual, and we’d also love for you to see if your place of work, school, community group, hospital, church, sporting team, favourite cafe…basically anywhere that is likely to come into contact with people with diabetes (i.e. literally everyone!) would be interested in signing too.
This is a true community effort, with involvement from stakeholders from across the diabetes landscape, across the world. You won’t see logos anywhere, because this for and about all people with diabetes. The names of the people involved in the work so far is on the website.
Are you with us?
A few weeks ago, I saw a post on LinkedIn from Nick Dawson. Nick was around Twitter health communities a lot when I first joined and it was great to read his post and take a wander down Twitter’s memory lane.
The feeling of nostalgia was strong. I don’t remember joining Twitter, but I do remember when I started actually using it to connect with others with diabetes from around the globe and how my diabetes world suddenly seemed infinitely bigger. No longer was I constrained to only people in my own networks, or even my own country. I was a global citizen in the diabetes online world. And it felt great.
Twitter became the cornerstone of a lot of my own advocacy and connections online. I never missed a weekly #DSMA tweet chat, expertly moderated by Cherise Shockley. The rapid fire hour of diabetes power often included hundreds of people. Dana Lewis’ #HCSM weekly chats brought together from different health communities, opening my eyes not only to different healthcare struggles, but also to solutions that helped me with my own diabetes. I used Twitter to find people who were doing incredible things that elevated the voice of people with diabetes. It was on Twitter that I followed along with the first Roche blogger summit that brought together US social media pioneers. I used those sorts of events to shape the Australian Social Media Summit that was held at the end of 2012, coordinated by Diabetes Victoria, bringing together Australian diabetes social media folk and Kerri Sparling from the US.
I was part of the team that started the weekly #OzDOC tweet chats in July 2012, working with Cherise to help get things started close to home. Around the same time, the first #GBGoc tweet chat happened and the first #dedoc° chat, #FRDoc and #ItDOC followed soon after. Back then, those chats were brilliant at highlighting local issues, but by and large, they were indeed global.
Twitter was the tool I used to take notes at conferences, live tweeting sessions to share with those not in the room, and then pulling the information together in briefing documents at works, and writing articles here and on other platforms. And Twitter was the channel where remarkable whole community events happened. Remember Kelly Kunik’s #IWishPeopleKnewThatDiabetes and those #DayOfDiabetes discussions? Or the groundbreaking and overwhelming community event that was #Simonpalooza? It was peer support on demand. There was no need to feel alone with your diabetes if you were on Twitter!
And then, I don’t know when, Twitter changed. Or I changed. Or the community changed. It became harder to find the people who had shone so brightly and made Twitter a place of support and community. I stuck close to old friends who never advertised the Twitter following count, because who cared? I learnt the difference between an advocate and an influencer. And I started to steer completely clear of parts of the community which was so alien to what it had been like when I first joined. #DSMA chats became less frequent because Twitter chats became kind of old hat. #OzDOC chats completely stopped because there hadn’t been a sustainability plan in place and there really wasn’t anyone to take over. Perhaps this was a reflection of how the community wanted to engage and what they…what we…wanted.
For me, most of the day-to-day reaching out I used Twitter for moved to being via private channels. And that worked fine and became the same lifeline that the public space Twitter had once been.
There have absolutely been some bangers recently that have made me remember how great Twitter can be. The weekly #DiabetesChat, using Spaces, launched a new community that, although based in the UK, was very much global. Tom and the organisers went out of their way to include people from other places around the world to be interviewed and lead discussions. I loved it straight away for the beautiful open and welcome feeling that was there and embraced it. #dedoc° isn’t really a Twitter based organisation, but the #dedoc° voices use it brilliantly, and diabetes conference are so visible because of their prolific sharing.
In the last few days, a new Twitter-like app called Threads has been launched and I tentatively signed up and had a nosy look around. It felt like Twitter in 2012. Friendly. Fun. Open. I’ve found Threads friends (thriends?) who I’ve not seen around the Twitter traps for years and have re-engaged. I’ve managed to steer clear from the parts of diabetes Twitter that I’ve actively avoided over recent years.
It’s not perfect. There needs to be an option for people to add ALT text to photos, because that’s not there yet. Apparently it is coming. (But, you know, accessibility should have been a first level consideration, not an after thought…) A desktop version would be useful – it’s annoying only having the option to type on a phone keypad. The lack of hashtags is annoying. (Just today, I went back and read the tweets from that first Australian social media summit by searching the hashtag. What a treasure trove!) Again, this is said to be on the cards. As is the capability to see only threads from people you’re following rather than the mishmash right now. Having said that, sprinkled in amongst the predominantly diabetes focused threads I’ve been seeing, I’m not too disappointed with the cat pics, recipes and book recommendations that I’m seeing a lot of. Also pleasing is that I’ve managed to avoid so much as a hint of the crappy, manipulative, misogynist side of the diabetes world that clouded my Twitter experience for a while before I worked out how to block it out completely.
Is this the future of Twitter? Over here on this new app? Threads feels like the nostalgia Nick wrote about. It really does feel like the ghost of Twitter past and I like it a whole lot more than the ghouls of Twitter present. Come and visit if you’re not there already. I’m @RenzaS and you’ll see me sharing diabetes stuff, pet photos, books. And asking people about their diabetes experiences to help me make sense of my own. I hope to see you there!
All too frequently, when talking about meaningful lived experience engagement, I hear about ‘Hard to Reach Communities’. A number of years ago, I called rubbish on that, putting a stop to any discussion that used the term as a get out of jail free card to excuse lack of diversity in lived experience perspectives.
‘People with type 2 diabetes don’t want to be case studies’ or ‘Young people with diabetes don’t respond to our call outs for surveys’ or ‘People from culturally and linguistically diverse communities won’t share their stories’ or ‘Folks in rural areas don’t come to our events’. These are just some real life examples I heard when asking why there was no diversity in the stories I was seeing.
See how the blame there is all on the people with diabetes? They don’t want, don’t respond, won’t share, won’t attends. It’s them. They’re the problem. It’s them.
I stood on stage at EASD in Stockholm last year and challenged the audience to stop using the term ‘hard to reach’. Because that’s not the case at all. The truth is that in most cases, the same old, uninventive methods are always employed. And those methods only work for a very narrow segment of the community.
I recently heard someone begrudge that all applicants who responded to a recent call out for a new committee were the same: white, had type 1 diabetes, city-dwelling. ‘Of course they are,’ I said. ‘That’s the group that loves a community advisory council and responds to an expression of interest call out on socials. They are able to attend meetings when they are scheduled, are confident to speak up and are willing to share their story, because they probably have before and received positive feedback for doing so Plus, they’re expecting everyone else at the table will look and sound just like them.’
But the lack of diversity isn’t the problem of the people who didn’t respond. It’s the problem of whoever is putting out a call and expecting people to reply because that’s how it’s Always Been Done.
This was a discussion at a meeting during last week’s American Diabetes Association Scientific Sessions. The #dedoc° voices were meeting with the ADA’s Chief Scientific Officer, Dr Bob Gabbay, and Vice President in Science & Health Care, Dr Nicole Johnson. The question about how to reach a broad audience was asked. At #dedoc°, efforts have been made to attract a diverse group of people to our scholarship program, and have, to a degree there as been some success. A glance at any one of the #docday° events, or scholarship alumni will see people who had not previously been given a platform within the diabetes community. But there is always more than can be done.
The discussion in that meeting at ADA mirrored many that happened throughout the week. And it’s not surprising that US diabetes advocate Chelcie Rice came up with the perfect way to explain how to do better at engaging with the who have previously been dismissed as ‘hard to reach’. He said: ‘You can’t just put pie in the middle of the table. Deliver the pie to where they are.’ And he’s right. Those tried and true methods that work for only one narrow segment of the community have been all about putting pie in the middle of the table, knowing that there will be some people ready with a plate and a fork. But a lot of people are not already at the table, or comfortable holding out their plate. Or maybe they don’t even like that pie. But we never find out because no effort is really made.
Chelcie once said ‘If you’re not given a seat at the table, bring your own chair‘ and I’ve repeated that quote dozens, if not hundreds of times. And his words ring very true for people like me who have felt very comfortable dragging my own chair, and one for someone else and insisting that others scramble to make room for us. But that metaphorical table isn’t enough anymore. Not everyone wants to sit at a table and we need to stop expecting that. Instead, it’s time to find people where they are – the places, the settings, the environments they feel comfortable and at home. That’s how you do engagement.
On day 2 of the American Diabetes Association Scientific Sessions, rushing between meetings, I overhead another attendee say this: ‘I’ve never heard so many people talking about diabetes stigma’. I turned to them, a bright smile on my face and said, ‘I know, right?’, (a phrase I only ever utter when I’m in the US).
Just a few hours earlier, Jazz Sethi and I had tweeted simultaneously, setting free an open letter from the diabetes community about diabetes-related stigma. You may have seen it; thousands of people have. And others have shared, commented and even translated it into different languages (I think we’re at 6 translations and counting). Here it is!
When we first asked advocates from the community if they would like to add their logo to the letter we were surprised by the quick response. Almost everyone we went to said yes. We hadn’t gone out too widely – we wanted to test the waters first. The first version of the open letter includes advocates and peer support groups from across the world. Amazing!
And after our very low-key, (i.e. a couple of tweets from unverified Twitter accounts, so who knows what the algorithm did with them!), we were once again inundated by people asking for us to add their logos. (We haven’t managed to add them yet, but absolutely will in coming weeks. Please give us time if you’ve shared your logo. We’ll get there. And I’ll update this post with the new final page when that happens.)
There is something magic about these sorts of very grassroots, very community, very inclusive initiatives. Not only are they great because they collaboratively offer a narrative from people with diabetes, highlighting an issue that is of great importance to many. They also show you just how powerful and united our community is while also pointing to individuals and groups who are keen to work together, support each other and power the importance of lived experience. And that’s pretty special!
Diabetogenic 