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Gosh, there’s lots in the #DOC-iverse (#DOC-osphere?) about seeing diabetes, isn’t there? Yes, yes there is. Not sure about you, but I seem to be seeing a lot of bright, shiny, happy people (and a pop star or model or two) talking about diabetes, when usually they are pretty quiet about the whole diabetes thing. Which is fine. No one needs to spend their time advocating all about diabetes every minute of the day.
But I wonder if any of the marketing boffins who threw together their messages of inspiration bothered to check to see what the International Diabetes Federation are up to for World Diabetes Day on 14 November. Afterall, that’s the showstopper event of the month, isn’t it? Celebrating the birthday of the bloke who I give thanks to every day for keeping me alive.
A bit of history about World Diabetes Day to help understand that it’s not just about privileged folks with diabetes showing off their high-tech gadgets strapped to their impossibly beautiful bodies. (And yes, I know I sound like the Grinch who stole World Diabetes Day, but I think that understanding the foundation of this day is kind of important because that all seems to get swallowed up in PR spin.)
World Diabetes Day means something. In 2006, it became an official United Nations Day thanks to United Nations Resolution 61/225. At the time it was one of only two official UN health days. But even before that, World Diabetes Day had been going on for some time. It was in 1991 that the IDF, together with the World Health Organisation, created World Diabetes Day in response to growing concerns about diabetes.
Over the last thirty years, World Diabetes Day themes have aimed to be inclusive of people from around the globe, but perhaps there has been a (necessary) focus on how to improve diabetes outcomes for people in under-resourced countries. Maybe that’s why I find it a little galling when it appears that the day is about showing off your latest diabetes kit or shouting to the globe about how diabetes doesn’t stop people reaching their dreams. I love positivity and I’m often accused of being far too Pollyanna for my own good, but having a good look beyond our own privilege is important if we’re trying to get across a global idea of what is going on in the world of diabetes.
This year the theme is ‘Access to care: if not now, when?’. The World Diabetes Day website is full of resources that explain the theme. There are materials you can share to help explain just what access means to different people.
It all seems to be a little bit of a throwback to community initiatives of the past. The diabetes community has been the creators of some absolutely stellar campaigns – ideas that seem to have been founded in similar frustrations about which I’m smashing on my keyboard today. In 2014 there was a campaign that asked us to ‘Put the World back in WDD’ which was in response to there being a very Western focus on World Diabetes Day. Sometimes it feels that some things never change. The #Insulin4All hashtag that was first used to highlight how people in under-resourced countries struggle to access insulin is now most often linked with insulin pricing in the US.
Access means different things to different people, and the materials the IDF has put together consider this. Even if you live in a well-resourced country, with decent subsidised, tax-payer funded (never free!) healthcare, it’s likely that some part of your diabetes care is still difficult to access. It may not be insulin or diabetes supplies that are your access issue – it could be mental health support or different tech solutions.
Here in Australia, thanks to Medicare, the PBS and the NDSS, we have well-subsidised diabetes care. It’s not perfect, but it is certainly better than I hear from friends in other places around the world. But there definitely are still deficiencies in our care. Mental health care is limited – and almost impossible, it seems, to access. Only 50% of people with type 1 diabetes can access subsidised CGM and Flash GM through the NDSS. People in rural and remote areas of the country have far more difficulty accessing quality, regular diabetes care. The outcomes for Indigenous Australians with diabetes fall far behind. As always, people who are disadvantaged in some way are disproportionately affected, and face more difficulties accessing the care they need.
How you choose to celebrate (or not) this month and World Diabetes Day is entirely up to you. You may choose to ignore the ‘official’ theme of the day and focus more on other initiatives and once again, all perfectly okay. Just as YDMV, so may your diabetes advocacy.
But if you are interested in focusing more on access, have a look at the World Diabetes Day website and pledge your support for greater access to diabetes care. Read about the Resolution that was adopted by United Nations Member States that calls for urgent, coordinated global action on diabetes.
Look, I know. UN Resolutions don’t sound nearly as sexy as a six pack with a CGM plastered to it, but it is pretty cool that the WHO and the UN are talking diabetes.
And while celebrating the centenary of insulin, learn where insulin is not easy to come by, and why that is. Through volunteer work supporting both Life for a Child and Insulin for Life, I have learnt a lot about the challenges faced by people with diabetes in under-resourced countries. If you can, please consider making a donation this month to either, or both, charities.
And if looking to the community, it’s wonderful to know that there will be a docday° event on World Diabetes Day that is dedicated to the theme of access. You can learn more about that event here. It’s free to join, and will be live streamed on Facebook – you don’t even need to sign up.
But perhaps a final thought. How great would it be if those with really, massively high followings, (and followings not-only-in-the-diabetes-community), used this time to talk about making a real difference – a difference to people with diabetes who are struggling to access the basic drugs and supplies to actually live with the condition.
Sure, ‘seeing diabetes’ helps raise awareness, but as ever, I ask how much of that actually cuts through and gets out of the community that is already seeing diabetes every single minute of every single day?
I probably should stop thinking of my job as ‘my new job’. I’ve been at Diabetes Australia now for well over five years. But for some reason, I still think of it that way. And so do a lot of other people who often will ask ‘How’s the new job?’
Well, the new job is great, and I’ve enjoyed the last five years immensely. It’s a very different role to the one I had previously, even though both have been in diabetes organisations.
One thing that is very different is that in my (not) new job I don’t have the day-to-day contact with people with diabetes that I used to have. That’s not to say that I am removed from the lived experience – in fact, in a lot of ways I’m probably more connected now simply because I speak to a far more diverse group of people affected by diabetes. But in my last job, I would often really get to know people because I’d see them at the events my team was running, year in, year out.
Today, I got a call from one of those people. (I have their permission to tell this story now.) They found my contact details through the organisation and gave me a call because they needed a chat. After a long time with diabetes (longer than the 23 years I’ve had diabetes as an annoying companion), they have recently been diagnosed with a diabetes-related complication. The specific complication is irrelevant to this post.
They’ve been struggling with this diagnosis because along with it came a whole lot more. They told me about the stigma they were feeling, to begin with primarily from themselves. ‘Renza,’ they said to me. ‘I feel like a failure. I’ve always been led to believe that diabetes complications happen when we fail our diabetes management. I know it’s not true, but it’s how I feel, and I’ve given myself a hard time because of it.’
That internalised stigma is B.I.G. I hear about it a lot. I’ve spent a long time learning to unpack it and try to not impact how I feel about myself and my diabetes.
The next bit was also all too common. ‘And my diabetes health professionals are disappointed in me. I know they are by the way they are now speaking to me.’
We chatted for a long time, and I suggested some things they might like to look at. I asked if they were still connected to the peer support group they’d once been an integral part of, but after moving suburbs, they’d lost contact with diabetes mates. I pointed out some online resources, and, knowing that they often are involved in online discussions, asked if they’d checked out the #TalkAboutComplications hashtag. They were not familiar with it, and I pointed out just how much information there was on there – especially from others living with diabetes and diabetes-related complications. ‘It’s not completely stigma free,’ I said. ‘But I think you’ll find that it is a really good way to connect with others who might just be able to offer some support.’
They said they’d have a look.
We chatted a bit more and I told them they could call me any time for a chat. I hope they do.
A couple of hours later, my phone beeped with a new text message. It was from this person. They’d read through dozens and dozens of tweets and clicked on links and had even sent a few messages to some people. ‘Why didn’t I know about this before?’, they asked me.
Our community is a treasure trove of support and information, and sometimes I think we forget just how valuable different things are. The #TalkAboutComplications ‘campaign’ was everywhere a couple of years ago, and I heard from so many people that it helped them greatly. I spoke about it – particularly the language aspect of it – in different settings around the world and wrote about it a lot.
While the hashtag may not get used all that much these days, everything is still there. I sent out a tweet today with it, just as a little reminder. All the support, the connections, the advice from people with diabetes is still available. I hope that people who need it today can find it and learn from it. And share it. That’s one of the things this community does well – shares the good stuff, and this is definitely some of the good stuff!
Want more?
Check out the hashtag on Twitter here.
You can watch a presentation from ATTD 2019 here.
Read this article from BMJ.
At the last IDF Congress, I was invited to be part of the first panel on the opening morning of the meeting. It was all about diabetes and technology. Before the questions, the moderator, my friend Kyle Jacques Rose, asked everyone to introduce themselves. When it got to my turn, I said who I was and then shamelessly and unapologetically said I was the most important person the stage (along with Kyle and Manny Hernandez, who also live with diabetes). I remember looking steadily out into the audience as I made my claim to see the response. There was some who looked taken aback. And then some who cheered (thanks to the other PWD in the room!).
Last week, I was in a two-hour workshop. I knew maybe half the people there. I also knew that I was the only person there to provide the ‘user’ experience. This isn’t uncommon, but it still drives me nuts when it happens, especially in a session that was about finding the right person-centred model of care in the age of telehealth. When it came to introducing myself, I thanked the organiser for inviting me, and said that it was great to be there…as the most important person in the (Zoom) room. One of the researchers I know well and who I have worked with quite a lot in recent years, smiled widely. At least I had one person in the room who got me. I watched again to see how others responded. Some certainly did look a little shocked.
I explained that having people like me to feed into the work is critical, and that it was great that they wanted to hear from someone with lived experience to (and it would have been great to have seen a few other folks doing the same).
So, how do I manage to be ‘the voice’ of lived experience when it comes to these sorts of things? When the meeting is diabetes-specific what do I say that captures the needs and wishes of every single person with diabetes? And, as in this meeting, when it’s about designing a system that is for all people with a variety of health conditions, how do I effectively and adequately tell the HCPs and researchers in the room just what it is that those people want?
The answer is, I don’t. Of course I don’t.
I can’t speak to anyone else’s experience other than my own. I can’t say ‘I need this’ and assume that is what everyone else wants, and I would never make that assumption. Nor do I try to convince anyone that my needs and experiences are representative of anyone’s other than me.
I will advocate until I am blue in the face that there needs to be many different people consulted and engaged in the design, delivery and dissemination of healthcare services, activities, and resources. Sometimes, that does happen. But if it is only me, I am never there to provide specifics of what needs to be done. In fact, I spend most of my time urging (begging and pleading) for assurances that there will be far more, far better, far meaningful engagement from this moment forward.
I see my role is to pointedly, deliberately, unambiguously, and often, bolshily, make sure that the others in the room embed the idea of co-design in everything they do. And do it with wide representation.
I honestly don’t believe that there can ever be too much lived experience representation. But in the cases when there is only very little, I have rarely met anyone who claims to be the oracle of all things to do with lived experience or believe that their ideas are the only one worth listening to. In fact, anytime that has happened that person never is asked back.
When I am asked to help find people for an advisory board, or to be involved in consultation, I always search for people who I know can look beyond their own experience. Again, it’s not because they are expected to speak for others. Rather it’s to know that there are others with different experiences and that, while they are the one at the table in that moment, they will do everything possible to make sure that those others are invited next time.
And THAT, is why, at times like this, people like me are the most important people in the room – those of us who are banging a very loud drum to make sure that our cohort grows and grows. If you are working in healthcare and don’t have people with lived experience as part of the discussion, you’ve forgotten the most important people.
Stop what you’re doing, RIGHT NOW, and go find them.
Last night, I had the honour of speaking at the World Health Organisation Informal Consultation on Diabetes, which is currently taking place as a virtual event. It’s a three night/three day (depending on where you are in the world) event that has brought together people living with diabetes from all corners of the world.
This was a widely advertised event, and anyone could apply. The expression of interest call out was all over Twitter, Facebook and diabetes community groups. Unlike some other initiatives and programs, PWD didn’t need to be nominated by a diabetes organisation or HCP to be part of it. You just needed to fill out the application form (which didn’t take too long), and submit. Clearly a lot of people with diabetes saw it and thought it was something they wanted to be involved in! I’m not sure of the overall numbers, but there is certainly terrific representation from a number of communities.
On my Zoom screen I could see a combination of familiar faces, faces of people I know of but have never met or engaged with, and a whole lot of new faces. Hearing their stories, and reading the discussions that are filling up the chat box are enlightening. And reassuring. Because once again I was struck by how strong, vulnerable, admirable and strong-willed others treading the diabetes path can be. There are striking similarities and glaring differences. But common threads that run through the narratives we heard And mostly? There is support and gratitude to be there and to bear witness to others sharing their stories, ask questions and learn. Not a single snipy comment or passive aggressive remark – not because we all agree or are a homogenous group. But rather because we respect and value and admire the people who have the courage to stand up and be present.
I was invited to speak in a session about diabetes advocacy. The session’s title was ‘Strategic communication in global diabetes advocacy’, and it included Christel Marchand Arpigliano from Beyond Type 1 and Lauren Carters-White, a research fellow from the University of Edinburgh. Christel spoke about how when we tell our diabetes stories, we are translating the language PWD use – language that makes sense to us – into words that reach a broader audience.
Lauren used some terrific examples from around the world to show the impact data and evidence can have in advocacy efforts.
And I rounded out the session by talking about how when we bring the two together, we win the hearts and minds of the people we are trying to influence – decision makers, legislators, policy makers, educators, healthcare professionals and researchers. Because when we have the emotional pull of how diabetes impacts on daily life, combined with the evidence to show what that means, we can’t be ignored! I highlighted how working with healthcare professionals and researchers to further our messages means that our lived experience can’t be dismissed.
I also spoke about how the power of stories is magnified when there are many voices and many different narratives. I have rarely, if ever, heard someone share their diabetes with the pronouncement that they speak for all with diabetes, or that their story is THE story. But they are all experts in their own lived experience and that certainly should be celebrated. And its power should not be underestimated.
I think the thing I have felt most strongly in that Zoom room is the camaraderie and solidarity – again, not because we are all on the same page and all want the same things. But rather, everyone truly supporting each other and bringing others into the conversation has been an overarching quality of the meeting. No one dominates; no one is more important than anyone else; no one claims to be THE advocate. We are all advocates working together, and supporting each other for a bigger cause.
Of course, we want, and expect, to see action come from the three days of meetings and workshops, and I have confidence that will happen. But in the meantime, to have such large group of dynamic people come together whose only agenda is community and to build each other up, rather than tear each other down, reminds me that THIS is what diabetes advocates can do and what the community is mostly about. Those snippy voices who try to minimise people who are truly trying to improve outcomes for people with diabetes aren’t present. Because what a waste of time that would be!
I may have spoken about, and given tips about how to win others’ hearts and minds in my talk, but it’s my own heart and my own mind that have been won over by my peers in this event.
(You can follow along the discussion by using the hashtag: #WHOPLWDs)
Disclosures
None. I am not being paid to attend this event, and have not received payment, honoraria or in kind donations for my presentation, and am attending in my own time. I might need a nap later today though, because the 11pm-3.30am time for Aussies on the east coast is tough going!
During a recent briefing call for a grant assessment committee I’ve been invited to join, I got a little sassy. My role is that of ‘consumer advisor’ – that is, someone who can lend their lived experience knowledge to assess the real-life application of the grant proposals, and the research methods outlined.
So far; so normal. I’ve sat on a number of similar committees over the last decade or so. The committees I really enjoy working on are when I am not the only non-HCP present. I love it when there are a number of people there for their real-life experience.
Today, I think I may have been the only non-HCP on this call, but there may be others involved who simply couldn’t be there at the nominated time.
The call today was pretty stock standard – timelines were explained, the IT system we’ll be using was described and the roles and responsibilities of the different people on the committee were clarified. And that’s where things diverted from what I’m used to.
As a consumer advisor, I am able to provide feedback about the different applications – just as all the HCP committee members do. There are primary and secondary spokespeople for the committee (both HCPs), and during the meetings to decide the outcomes of grant applications, they will provide most of the comments. After that, all others on the committee offer anything further. And then it’s time for the committee to score each assessment.
Everyone except the consumer advisors that is. My role will be to provide a ‘consumer perspective’, but I don’t get to provide a score. The scoring is what determines the success (or otherwise) of a funding application.
I sat through this meeting, listening carefully to the process being outlined, wanting confirmation that I had read the information accurately. Was the role of consumer advisor limited to just being able to make a comment?
When it was time for questions, I politely asked if I had understood correctly.
Unfortunately, I had.
I was given an explanation that this the process, set out by the governing department believes that consumer engagement and involvement in the assessment process is crucial and very important to the process, and that consumer comments are invited, but our vote is not.
There was a pause. A long pause. And then a longer pause. Thankfully, this was not a zoom call – it was an old school teleconference – so the others on the call couldn’t see the thunderous expression that had settled on my face. The pause still hadn’t ended.
So, I jumped in.
‘That sounds like the definition of tokenism, doesn’t it? We are there to provide comment and put forward our thoughts, but we cannot actually contribute to the part of the process that actually determines outcomes.’ I knew the next words that would be coming out of my mouth. ‘We have no real ability to influence. I find it difficult to understand how this can be considered meaningful engagement if we have no authority in the scoring process. That’s not how engagement works, it’s just…’ (Window dressing. That’s what I wanted to say.) ‘…it’s just a tick the box exercise.’
That was when the patronising comments came from others on the call. I should say that I don’t think they intended them to be patronising. But they were.
‘Oh, can I just say that I have been involved in similar processes and we always were happy to listen to the consumer advice consider it in our scores.’
‘The consumer feedback is important and has been very useful in the past.’
‘The consumer advisors are able to provide comments and they do. That’s really valuable feedback for us to consider.’
I said nothing. Because I honestly couldn’t care less how much I was listened to. And I know that what I – and others in the same role as me – have to say is valuable. It doesn’t matter which way it is spun, without a vote, I am not an equal member on that committee. That is the actual and perceived reality of the way it is structured
And more frustrating is that in the minds of many, there would be the perception that consumers had been effectively consulted. The lived experience is represented, they can add that to their report (because, undoubtedly there is a KPI that says consumers must be consulted) and all is okay. That tick the box exercise of inviting consumers onto the committee would be considered enough.
It’s not. In fact, it’s more problematic that not inviting us in the first place. I have said this before, and I keep saying it: without the ability to influence, without the means to be part of decision-making processes, strategic planning, governance structures, then all that is happening is tokenism. It is window dressing. And that is not good enough.
This week, it’s EASD. It’s is the first year since 2012 that I have not been in Europe for the meeting. EASD was the first large diabetes professional meeting I had ever been to, and I remember being struck at that very first one in Berlin by the stark absence of people with diabetes on the program and involved in the actual meeting.
My, how things have changed.
Except, of course, they haven’t. Sure, these days you will see growing numbers of PWD wandering the conference centre and attending sessions, but that really is only because we created opportunities for PWD to attend. And once we found a way to get there, we then made sure that we were visible in different ways such as leading social media charges and holding events open to all attendees.
There has been some very well placed and relevant conversation on twitter about the lack of diversity in the EASD organising committee. Too few women; too many white faces. But when we talk about inclusion, surely, surely we need to look at other groups that are significantly and obviously absent. Where are the advocates on there? Where are the BIPOC with diabetes? Where are people living with both diabetes and disabilities? Where is there representation from the diabetes LBGTIQ community? All of these factors impact on diabetes management, so wanting to see presentations that address them makes sense. And where is the lived experience on the program to underline, and provide real relevance, to the work that is being presented by HCPs, researchers and academics?
You bet there should be more women and more BIPOC on the organising committee for EASD. But if those on the committee, those doing the research, those HCPS seeing PWD truly want to beat the ‘person-centred’ drum, PWD need to be part of the group of people putting the conference together, and then strongly represented on the stage too.
#NothingAboutUsWithoutUs seems to STILL be missing from this whole meeting – from the organisation right through to the actual delivery of information. (I suspect that there may be some PWD on the program who are HCPs. While that is terrific, it is very different from having advocates who are not HCPs up on stage.)
So, this week, if you can, please support initiatives that do highlight the people who are actually living with diabetes. Please check and double check the times. I’ve tried to work out the AEST start time for all of the events, but don’t take my word for it! (Disclosure statement at the end of this article.)
#docday° & #dedoc° voices
This is the eleventh (I think??) #docday° event and I am so proud to say that I have been involved in every single one of these events. The first one was held in the back room of an overheated and overcrowded café in Stockholm five years ago. It feels like yesterday, and a lifetime ago all at once. Organiser, Bastian Hauck, asked me to say a few words, and this is what I wrote in a blog post about the event:
‘I highlighted for me what is the most important thing when we are talking about the DOC: No one owns this community. No one is more important or more relevant or more powerful. Sure, some of us are very fortunate that we get to actually meet IRL and attend conferences, but we do it as part of our jobs – whether it be like me (through my work at a diabetes organisation mixed with my online work) or through independent consulting or other work. But regardless if you are in the room or following along on Twitter, everyone has the same right to be here and to be part of it.’
We have livestreamed #docday° events in recent years, and I have written about most of them, and done all I could to encourage as many people as possible to come along and join in. This year, it will once again be livestreamed from the #dedoc° Facebook page from Tuesday (today) 12pm CET tonight, which is 8pm AEDT.
Also, make sure you keep an eye out for all the terrific advocates who received a scholarship to attend EASD via the #dedoc° voices program. They are sharing what they are seeing at the meeting on a variety of social platforms.
SOLVABLE PROBLEMS IN DIABETES
A few hours later, diaTribe will be continuing the Solvable Problems in Diabetes events which have been regular satellite events at European diabetes meetings in recent years. During COVID times, these events have been kicked off with a community focus event, showcasing diabetes advocates, which is a brilliant (and necessary) addition to the HCP discussion that follows. I’m a huge fan of diaTribe, and have been for a long time, but it has been the addition of Cherise Shockley to their team as Community Manager that has seen a wonderful increase in representation of PWD in their activities. But, of course it has. Cherise is all about community and the way she has been able to weave her magic to make diaTribe even more relevant to PWD – and more representative – is what she does best. You’ll need to register for this event (it’s free) here, and it kicks off at Tuesday 11.30am ET, which is (gulp) Wednesday 1.30am AEDT.
SEPTEMBER SESSIONS
While not part of EASD, Beyond Type 1 is hosting the next in their Summer Sessions and this week it’s focusing on racial and ethnic disparities in diabetes care. There is an absolutely stellar line up in this webinar. Please do follow along if you can – this event will also be via Facebook Live over at Beyond Type 1, and is on Wednesday 8pm ET, which is Thursday 10am AEST.
DISCLOSURES
- I am ad advisor to the #dedoc° voices program. I do not receive any payment for this role.
- I am speaking at the Solvable Problems in Diabetes Community Focus Sessions. I am not receiving any payment for my involvement. I am a regular contributor to diaTribe, and I am paid for commissioned articles.
- I am on the Leadership Council for Beyond Type 1. I do not receive any payment for this role.
Look what our community did! Here is the just released #SpareARose total for 2020. What a remarkable effort from a remarkable community!
The grand total of USD$73,748 will mean that, through Life for a Child, 1229 children with diabetes in under-resourced countries will have access to insulin for the next year. Amazing!
I guess there’s nothing more to say for this year, other than thank you, thank you, THANK YOU to all who contributed – whether that be through a donation or sharing the campaign.
Spare a Rose, Spare a Child will be back next year. Each year, we promise it will be bigger and better, and I’m sure that will be the case for 2021. Just watch us all go!
Diabetogenic 