What does co-design mean to you? Is it important? Are you ambivalent to the term? Do you think it pays lip service to placate a target audience? Or should it be at the very centre of any product designed to enrich, enhance or just simply make someone’s day to day life easier?

To a person living with diabetes, and their families who support them, it is always very apparent whether or not true co-design has been integrated into a product or service. Assumptions made by designers or developers who choose not to engage until there is an end product or service design is complete, make it very obvious to those people living with and around diabetes all the time, that people who need to use these products have not had input into them. Historically, this resulted in the creative resourcefulness of many people with diabetes having to make the best of what was out there, by adapting and creating innovative solutions that manipulate the product or services, to create something that was more in tune with the needs of the target user.

The EASD meeting offers a great opportunity for companies to properly engage with a large community of people living with diabetes. Some companies opt to do this proactively - listening and truly engaging with a wide range of voices which give a vast array of lived experiences. Each voice individual, each experience unique, but with common threads of similar irritations around limitations of devices or resources. Some members of the community have set up their own companies to produce products or solutions to address those irritations, or sometimes dangers, that arise from living a medical life that had no “opt out” clause. Their understanding and lived experience all serve to create truly innovative products, trusted and popular within the diabetes community, as their credentials of understanding are clear for all to see. And industry are able to see this and learn from it.

The community members that have the opportunity to attend EASD are always keen to engage with as many facets of the diabetes industry as possible. And it is wonderful to see that industry is now recognising the importance of this engagement. At the #DocDay (Diabetes Online Community Day) event at EASD, it wasn’t just members of the online diabetes community who were in attendance. Healthcare professionals eager to listen and learn from the lived experience also came. And some of the industry was represented too. This is hugely important as more technical solutions are created with the aim of lessening the burden of diabetes. One person’s solution can sometimes add to another’s burden. But if ears are with the people who need (and important to remember, don’t want to need) the solutions or devices being developed at a point before the first pen stroke on a page has occurred, then we will begin to see the development of solutions that are more fit for purpose. Collaboration is key.

What should also have been apparent to people who work in diabetes, but don’t have to live with it, was the huge heart and fierce loyalty the diabetes community possesses. The #docday event showcased multiple projects, all led and run by people living with diabetes, all delivered with passion and energy. After the presentations came the opportunity to discuss and so many people took time from their busy schedules to invest in engaging, learning more about the topics and offering support where able. This goes to the essence of how supportive the community can be. Uplifting and amplifying one another’s work helps to generate interest outside the community too, ensuring healthcare professionals and industry recognise the importance of these interactions and just how much they are able to learn from observing. As someone who doesn’t live with diabetes, I came away from the event with the same feeling I always have - admiration for those who are ordinary people living with diabetes, who choose to channel their energies and time into positively impacting the lives of others living with diabetes. I do admire their work, their passion, their commitment to making that difference. Those people who benefit most from their efforts will never know their names, but their lives will be enhanced by their efforts. And that, for me, is what remains remarkable about their advocacy.

There are some fantastic blog write ups which detail the specific presentations at this year’s EASD #docday and they can be found by searching #docday.

Attending a diabetes conference, especially one as scientifically focused as EASD, is always an interesting juxtaposition for a lay person. I do not have diabetes and I do not boast a medical degree. My credentials to attend such a conference fall solely within the realms of “mother of a child living with diabetes” and my ability to attend such a conference is reliant upon invitation and support from industry who are trying to engage with diabetes communities and learn from a vast array of experiences.

My aim from attending is therefore to share the sorts of discussions that evolve from everything a conference like this provides. From highlighting differing uptake rates of a multitude of therapies and devices used in the treatment and management of diabetes, and how these may differ widely across different countries, to reviewing just how relevant the research being conducted is to a person or a family living with and around diabetes.

So what have been the hot topics at this year’s EASD?

There was much discussion around empowering a person living with diabetes, and how they must be educated. Now, I wholeheartedly agree with the empowerment part. And the education part. But these are often presented as something which has to happen to a person. Educational literature or a programme is compiled, a format and delivery model are decided, and only then at that point is the person who needs to benefit most from that information informed how they will be educated. This needs addressing.

Learning is most effective when delivered at a point a person is most receptive to acquiring a new skill or knowledge, and crucially, in a format they find accessible. They need to see and understand a purpose in developing that particular skill set. Ensuring that it is acknowledged that people have different learning styles is pivotal to this too. Producing educational content that can be readily adapted to the seven learning styles is key to success. Almost all the current forms of educational resources that are in mainstream use favour the Verbal (linguistic) learner. Some programmes incorporate the Social learner too, but there is still a long way to travel if we are to meet the needs of those people whose learning styles favour Kinaesthetic, Visual, Aural, Logical and even Solitary. In Berlin, there were a couple of presentations and current initiatives which reflected the success that can be achieved with this more holistic approach to education.

And I think it is also important to note, that success cannot be solely judged on the clinical, bottom line HbA1c result. Quality of life is by far the most important gauge with which to measure the success of such educational approaches. If the education is delivered in an accessible manner, which lands the messages it needs to, then the person living with diabetes will feel far more empowered to live the life they want, without self-imposed limitations.

It is well researched and documented that a person living with diabetes has a greatly improved quality of life if they are knowledgeable and well supported in their management. I was greatly encouraged to finally see and hear some presentations addressing the above issues (albeit in venues tucked far out of the main space and poorly promoted), looking at the merits of a tailored approach for the individual. These sessions recognised the importance of working in a manner which is collaborative and allows the person living with diabetes to be the conductor of their care, so it may continue to work at its most optimal for that person. This is the main key. Listen to the person. Hear what they are telling you. Then together, it becomes possible to facilitate the learning that will empower that person with diabetes.

Another interesting subject, that is an ongoing, recurring theme at conferences, is the uptake of the latest technologies and the variations in care that it highlights across different countries. This year’s EASD provided the latest snapshot of the picture across Europe. What emerges is a picture where management, when judged on factors such as HbA1c and time in range, is greatly improved in the countries where there is large uptake of this technology. In countries where the uptake of technologies is high, there comes, by nature of the treatments supported and the familiarity with tech devices, far higher levels of expertise from supporting HCPs about how to make the most of technology to support management of diabetes. This is important to note, as the support a person living with diabetes is given will be far more beneficial when given with a multitude of experience and expertise. The more clinicians initiate the use of devices and technologies when working with people with diabetes, the more everyone learns about the capabilities and functionality of this tech.

Experience breeds confidence, and people living with diabetes benefit enormously from care and support delivered by clinicians they know and trust when embarking on new therapies and treatments. In countries where a self-funding model is more commonplace for accessing new technology, then you will find the expertise lies not with the HCPs supporting a person with diabetes, but from the person themselves. Their economic wherewithal to support their tech use, their independent research into learning about the different technologies available, and their decisions about which to invest in, all culminate in a level of understanding and education that an HCP who has had little to no diabetes tech exposure can only dream of.

Engaging clinicians and investing in training for the HCPs tasked with supporting people living with diabetes, even in territories where self-funding is the main source of sales, will result in the overall experience of people living with diabetes being enhanced. Encouraging a collaborative approach to using technology and devices will be beneficial to everyone involved in diabetes management.

Diabetes research also came under what could be considered long overdue review, with some grass roots initiatives on show that were designed to question the research projects scientists and researchers propose to pursue. Academic research can, at times, feel remote and irrelevant when compared to the realities of living with diabetes. I have lost count of the amount of times I have been aghast at a research project that has not only been proposed, but funded and taken to its conclusion. The relevance of the project could be questioned when scrutinised next to the fundamental realities of living with diabetes. The initiative that was started at this year’s EASD aimed to pair researchers to PWDs who had experience, knowledge or interest in the topic they were proposing to research. It is no surprise that the genesis of such a project had its roots firmly placed in the diabetes community. What is refreshing is the willingness now of all invested parties to collaborate to ensure all efforts within this field make a difference and are not just filling time.

EASD is a fascinating conference. Being very scientifically driven, it has been slow to pick up on how important the language used in and around diabetes is, and the impact poorly chosen words may have on a person’s ability to address the endless and relentless diabetes tasks they must perform every day. This, coupled with what at times feels like sidelining the important work being undertaken by those working on the psychosocial impact of chronic conditions, results in a conference that at times feels like it has forgotten there are real people, with real lives, on the receiving end of the case studies and scientific research that are presented to great fanfare. It is my hope that the organising committee learns from the strong programme they hosted this year, with many global leading experts on psychosocial impact of diabetes, and recognises the importance of keeping at the heart of the conference the reason why everyone is gathered there. The one person who should be the focal point of the entire conference. The person living with diabetes.