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One of the real pleasures of working in the health sector has been learning from people outside the diabetes space. So much of my work is contained to the goings on in the World of Diabetes, but it is always fascinating to hear from people who are dealing with different health conditions.
And so, it is no wonder that I was enthralled during an event I was involved in for APPA a few months ago. One of the things I really appreciated about this webinar was APPA bringing in discussions about person-centred care, person-centricity, and the role of lived experience in medical affairs. It’s a tricky area thanks to obstructive codes that often act as a barrier to real engagement and involvement from those of us with lived experience.
I was thrilled to hear from Richard Vines, Founder and CEO of Rare Cancers Australia, especially his thoughts about the role of people with lived experience of rare cancers in his organisation’s advocacy efforts.
Richard spoke about how active and involved families of people with lived experience of rare cancers are in their advocacy efforts. He told a lovely tale of the myriad notes and small gifts in the (now previous) health minister’s office that had been sent to him from families who he’d met through the organisation’s lobbying and advocacy campaigns, thanking him for increasing funding and helping raise awareness of rare cancers and the challenges faced by people diagnosed with one. Richard shared that involving and including those people in all their activities was key to his charity’s success. It didn’t surprise me one bit that his attitudes closely mirrored the ‘Nothing About Us Without Us’ calls that form part of my daily advocacy.
The APPA event was back in March, and it coincided with the handing down of the Australian Federal Budget. I, along with many other people with diabetes, were devastated to learn that there was no funding allocated to broadening access to the NDSS CGM initiative. That, of course, came a month later as an election promise, but at the time, we didn’t know that.
Before that bipartisan election promise, many people with diabetes had dual frustrations of being blocked from affordable access while at the same time knowing that there have been Living Evidence Guidelines for type 1 diabetes technology for over a year now that clearly state that CGM is recommended for all adults with T1D (over BGL monitoring).
It makes no sense that professional and lived experience bodies have taken the latest and best evidence to provide guidelines for the best use of technology in the management of type 1 diabetes only to have limited funding to make it a reality. But I wondered just how many people the health minister had heard from – really heard from – to understand that. I wonder if he has letters of thanks from people with diabetes in his office.
The message that came home loud and strong from Richard Vines was that advocacy success is more likely when there is strong representation from those with lived experience to round out the story provided by evidence and guidelines. Hearts and minds. Minds and hearts.
We need more ‘hearts stuff’ from those that generally use evidence to support their case, and more ‘mind stuff’ from those who generally use lived experience to support theirs. And the lived experience must come – it can only come – from those with real skin in the game, not those adjunct to it, or claiming to speak for it.
Disclosure
I was invited to be a panellist for this Australian Pharmaceutical Professionals Association webinar and volunteered my time.
Throughout ATTD I got to repeatedly tell an origin story that led us to this year’s #dedoc° symposium. I’ve told the story here before, but I’m going to again for anyone new, or anyone who is after a refresher.
It’s 2015 and EASD in Stockholm. A group of people with diabetes are crowded together in the overheated backroom of a cafe in the centre of the city. Organising and leading this catch up is Bastian Hauck who, just a few years earlier, brought people from the german-based diabetes community together online (in tweet chats) and for in person events. His idea here was that anyone with diabetes, or connected to the conference, from anywhere in the world, could pop in and share what they were up to that was benefitting their corner of the diabetes world. I’ll add that this was a slightly turbulent time in some parts of the DOC in Europe. Local online communities were feeling the effects of some bitter rifts. #docday° wasn’t about that, and it wasn’t about where you were from either. It was about providing a platform for people with diabetes to network and share and give and get support.
And that’s exactly what happened. Honestly, I can’t remember all that much of what was spoken about. I do remember diabetes advocate from Sweden, Josephine, unabashedly stripping down to her underwear to show off the latest AnnaPS designs – a range of clothing created especially to comfortably and conveniently house diabetes devices. It won’t come as a surprise to many people that I spoke about language and communication, and the work Diabetes Australia was doing in this space and how it was the diabetes community that was helping spread the word.
I also remember the cardamom buns speckled with sugar pearls, but this is not relevant to the story, and purely serving as a reminder to find a recipe and make some.
So there we were, far away from the actual conference (because most of the advocates who were there didn’t have registration badges to get in), and very separate from where the HCPs were talking about … well … talking about us.
Twelve months later EASD moved to Munich. This time, Bastian had managed to negotiate with the event organisers for a room at the conference centre. Most of the advocates who were there for other satellite events had secured registrations badges, and could easily access all spaces. Now, instead of needing to schlep across town to meet, we had a dedicated space for a couple of hours. It also means that HCPs could pop into the event in between sessions. And a few did!
This has been the model for #docday° at EASD and, more recently, ATTD as well. The meetups were held at the conference centre and each time the number of HCPs would grow. It worked! Until, of course COVID threw a spanner in all the diabetes conference works. And so, we moved online to virtual gatherings which turned out to be quite amazing as it opened up the floor to a lot of advocates who ordinarily might not be able to access the meetings in Europe.
And that brings us to this year. The first large international diabetes conference was back on – after a couple of reschedules and location changes. And with it would, of course, be the global #dedoc° community, but this time, rather than a satellite or adjacent session, it would be part of the scientific program. There on the website was the first ever #dedoc° symposium. This was (is!) HUGE! It marks a real change in how and where people with diabetes, our stories and our position is considered at what has in the past been the domain of health professionals and researchers.
When you live by the motto ‘Nothing about us without us’ this is a very comfortable place to be. Bastian and the #dedoc° team and supporters had moved the needle, and shown that people with diabetes can be incorporated into these conferences with ease. The program for the session was determined by what have been key discussions in the diabetes community for some time: access, stigma and DIY technologies. And guess what? Those very topics were also mentioned by HCPs in other sessions.
There have been well over a dozen #docday° events now. There has been conversation after conversation after conversation about how to better include people with diabetes in these sorts of events in a meaningful way. There has been community working together to make it happen. And here we are.
For the record, the room was full to overflowing. And the vast majority of the people there were not people with diabetes. Healthcare professionals and researchers made the conscious decision to walk into Hall 118 at 3pm on Wednesday 27 April to hear from the diabetes community; to learn from the diabetes community.
If you missed it, here it is! The other amazing thing about this Symposium was that, unlike all other sessions, it wasn’t only open to people who had registered for ATTD. It was live streamed across #dedoc° socials and is available now for anyone to watch on demand. So, watch now! It was such an honour to be asked to moderate this session and to be able to present the three incredibly speakers from the diabetes community. Right where they – where we – belong.
DISCLOSURE
My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am now working with them as Head of Advocacy.
Thanks to ATTD for providing me with a press pass to attend the conference.
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.

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.
