In most cases, the answer to the question in the title of today's blog post will be “no.” At best, there will be some indication of involvement of people with lived experience. Perhaps there will be some avenue for “feedback” that will be touted as “consultation” or “engagement.” Spoiler alert: it will be neither.
The impact of co-design done well cannot be underestimated. D Code Diabetes For example, this fantastic resource brings together people with diabetes, researchers and clinicians to improve access to and understanding of diabetes research. International Consensus Statement on Destigmatizing Diabetes Another example is from the concept Launch Event. and This article was published in The BMJ Last week, researchers, clinicians and experiencers came together to discuss the importance of uninterrupted access to insulin during humanitarian and environmental crises, and were supported by BMJ patient editors.
We often hear that initiatives are co-designed, but when we look under the hood, we see that this is not the case. The same goes for claims of engagement and consultation. These three terms are used frequently, but in reality there is little to no engagement with the people the efforts are aimed at. (Learn more) for and aboutrather and and by.
I am increasingly frustrated by the allegations that diabetics are involved, because it is simply not true. But what worries me even more is how these allegations are being used to victimize diabetics. Let me explain.
Just recently, a diabetes campaign was unleashed on the wild side. It didn't get a very good response from many in the community. I remember finding out about it through messages from some supporters. A quick look at Twitter and other social media showed that many people in the community were not very impressed and were voicing their feelings.
I contacted someone about this campaign and “Rigorously tested for diabetics” That response has stayed with me. Pointing out testing for PWD is essentially victimizing PWD. The underlying reason is “Don't blame us. We showed it to the PWD.”
We contacted several people who allegedly saw the campaign and they said:I first saw it on Facebook this morning. That's troubling, but it's not really a problem. The problem is that “testing” a campaign (or anything else) comes with the sense that if it doesn't work, it's the fault of the disabled person who (presumably) glanced over it. The people who designed and launched the campaign are simply abdicating responsibility.
I didn't answer the “extensively tested” defense, but if I could, I would have said this: Just how involved were the people who “extensively tested” the campaign? Were they involved in development, or did they come on board once the game was ready for launch, after the entire conception, storyboarding, filming, and post-production? Were their suggestions, concerns, and ideas addressed? How and where? How many times did they see the campaign materials leading up to launch date? Were they acknowledged or recognized anywhere as co-designers? Were they compensated for their time and expertise? Getting answers to these kinds of questions will give you a pretty good idea of how involved there really was.
It goes without saying that testing something, extensive or not, is not co-design. It's not engagement. It's not consultation. It's an afterthought.
The same goes for asking for “feedback.” By the time you have something to give feedback on, a lot of the work has already been done without the community. My response to being asked for feedback these days has been: 'no', He went on to explain that he was always happy to offer his opinion when things were developing, but refused to give feedback simply to satisfy some token attempt at engagement.
It's also important to invite the right people to the right projects. This is one of the reasons I'm skeptical of the idea of community advisory groups: how is it possible to engage the same people regardless of the project? Most advisory groups have a few people with each type of diabetes, one or two parents with children with diabetes, and people from rural areas. But if you're working with older people with type 2 diabetes in aged care facilities, are people with type 1 diabetes the best people to engage? Or if you're working with gestational diabetes education, are parents with elementary school-aged children the best people to offer their lived expertise?
In the real-life community, we have a hashtag that's a slogan. I use it a lot because I love it, but I also use it a lot when I'm frustrated, which is what led me to this tweet a few weeks ago:
Saying #NothingAboutUsWithoutUs is how our lived experience community asserts true community engagement and meaningfully changes the status quo. The “we” in the hashtag is us. The #dedoc° team uses this hashtag frequently because it is foundational to what our organization does. It is not OK for others to just take this term and expect it to inspire trust in PWD. It doesn't.
There are great examples of how co-design can work and be truly branded with the #NothingAboutUsWithoutUs hashtag. The work that community groups are doing to improve equity in access to AID is one current example. The meeting in Florence that kicked off this work didn't actually involve the community. But from there, a few end users who attended the meeting reached out to the community and put together a change plan that everyone could be a part of. (The fact that over 4,400 community members are now involved is a testament to the I signed this petition It suggests that it resonates!
You can! If you need some ideas on where to start, it couldn't be simpler. Here are some guidelines that Jazz Sethi and I put together earlier this year, which is a really handy guide on how to get things started. I think it's time to start asking questions when there's an allegation of engagement. Put the burden of proof on the person making the allegation, because it's easy to tell if it's being done well, and even easier to tell if it's not being done well.