In November 2020, the World Health Organization (WHO) announced it was launching a Global Diabetes Compact to identify ways to support countries to develop and implement programmes to prevent and support the management of diabetes. Stage 1 of the development of the compact involved an informal consultation with various stakeholders with a focus on people living with diabetes from all over the world.
I first heard about the compact after seeing a tweet from people within the diabetes online community. To take part in the consultation I completed an online form sharing my experience of living with diabetes, my motivations for joining, what I wanted the compact to focus on, and any conflicts of interest. The opportunity to take part was open to anyone living with diabetes—unlike some other initiatives which require people to be nominated by an organisation or health professional—and the opportunity was shared widely online. The informal consultation took place over three afternoons in March and there were over 120 people in attendance. The majority of those present were people living with diabetes (70%) and both type 1 (55%) and type 2 (20%) diabetes were represented. The geographical spread of participants was also significant with representation from all six WHO regions. Each of the days were co-chaired by 2 people living with diabetes who had also been involved in the planning of the consultation.
The focus of the consultation was to identify ways to meaningfully engage with people living with diabetes at global, regional, and national levels. One of the topics which seemed to be among the highest priorities for people living with diabetes included the access and affordability of insulin. As 2021 marks 100 years since the discovery of insulin many people living with diabetes within the consultation shared experiences of struggling to get insulin due to lack of accessibility and the cost. It was felt this should be one of the key focuses for the compact. Another topic was a focus on strategies to ensure that people can continue to thrive with diabetes. Priorities discussed included access to education, mental health support, tackling stigma, and community intervention such as working with community leaders and organisations to inform strategies to best support people living with diabetes. The diversity of voices heard was also a big topic of discussion. Many shared their gratitude to the WHO for ensuring that those who presented at the consultation came from a wide range of countries and demographics. But there was a call to ensure there was always a focus on broadening the voices heard and that hearing one voice was not enough.
At the beginning of the consultation Bente Mikkelsen, director of the department of NCDs at the WHO shared a commitment to engage with people living with diabetes long term. During the discussions attendees at the consultation asked for the WHO to go beyond the usual storytelling and instead to turn these stories into actionable plans. The conversation moved from engaging people living with diabetes to partnering with them. It felt like there was a real acknowledgement from the WHO that the people who could make some of the biggest impact to the diabetes community were those sitting on the screen in front of them. Everyone was aiming for the same goal and the diabetes community had skills, knowledge, and connections to bring to the table.
Across the three days we heard from people living with diabetes, sharing how they were working with others within the diabetes community. The chat function within zoom was buzzing with messages of encouragement, support, and discussion. Breakout rooms were also used very effectively with each room being chaired by a person living with diabetes, as well as a note taker from the WHO. Despite the large group attending the meeting and the diversity of conversations I really felt I was able to actively contribute, and that the WHO were really hearing the perspectives of everyone in attendance. Dr Bente ended the session by sharing that it was time for the WHO to co-create and that they were ready to do so. She shared that this would not happen overnight, but asked the diabetes community to hold the WHO accountable going forward. We, the diabetes community, shared that we are ready too. The only thing missing was that feeling of the buzz in a room—if only we could have been together in person.
Emma Doble, Patient Editor, The BMJ