At this year’s annual congress European Association for the Study of Diabetes (EASD), Danish Diabetes and Endocrine Academy (DDEA) and the Danish Diabetes Association invited Tine Filges and Maja Michelsen, who has type 1 and type 2 diabetes, to participate. The experience was a great success to everyone involved.

Research should better the conditions for people who live with diabetes and endocrine conditions. Yet, the world of science can be hard to access if you are not a scientist yourself. Therefore, DDEA and the Danish Diabetes Association invited two women with diabetes to EASD with early-career researchers as their scientific hosts.

– Participating at EASD was a great opportunity to learn about new studies, meet researchers and companies, and ask questions from a patient perspective. I also shared news with my diabetes community at home, says Tine Filges.

Tine Filges has had type 1 diabetes since she was nine, and Maja Michelsen has had type 2 diabetes since she was 17. On top of managing diabetes, Tine and Maja support peers by communicating research findings back to those living with the condition who may not have access to research results. Tine Filges is the chairperson and co-founder of Type 1 – Danish Think Tank for Diabetes, and Maja Michelsen is a consultant from Aalborg Municipality.

– At the end of the day, research outcomes should improve the lives of people who lives with a disease. The aim of DDEA is to educate and train the next generation of researchers. Bearing these two things in mind, we think that activities within research should be directed not only towards researchers, but also involve those who live with the disease, says Managing Director of DDEA, Tore Christiansen.

– We would like to build bridges between researchers and the public, he continues.

Translating the Language of Science

The two organisations had arranged a joint plan for hosting Tine Filges and Maja Michelsen. DDEA had prepared a personalised programme with suggestions to scientific sessions based on their interests and diabetes type. The Academy had also paired them with scientific hosts: early-career researchers who attended sessions with them.

– To me, this was the best experience of the conference: we could attend the same sessions, and we could exchange perspectives. Much of the scientific language is difficult to understand. To have someone to share it with and to help me understand the research results was invaluable, says Maja Michelsen.

Postdoc Jori Aalders is a researcher in the field of psychosocial aspects of diabetes. She was one of the scientific hosts at the conference.

– My goal is to improve the lives of people living with diabetes. Being a host at EASD felt like a way to help to communicate relevant research findings back to the community. At the same time, I was curious to hear more about Maja’s and Tine’s perspectives and reflections on research, says Jori Aalders.

Photo: Tine Filges and Maja Michelsen with scientific host Jori Aalders.

When joining sessions with Maja Michelsen and Tine Filges outside of her own area of expertise, she also found it hard to decipher what the presented findings meant for people living with diabetes at times.

– It was a great experience meeting Maja and Tine! I learned that we – researchers – need to better communicate how our research and findings are relevant for people living with diabetes, says Jori Aalders.

New Research Ideas

Benjamin Lebiecka-Johansen, a postdoc researcher and data scientist from Steno Diabetes Center Aarhus, was also a scientific host. To both early-career researchers, the experience highlighted the importance of involving people who lives with the disease in the process of designing and conducting research.

– It was great speaking with Tine and Maja. Their concerns and ideas are not always showcased in research, says Benjamin Lebiecka-Johansen.

Photo: Maja Michelsen with scientific host Benjamin Lebiecka-Johansen.

At EASD, Maja and Tine actively engaged with the research community and asked relevant questions.

– During the past days, I learned a lot from Maja and Tine about their daily lives with diabetes: What questions do they have? What do they find important? How do they feel about research, and what do they get out of it? In order to improve the lives of those living with diabetes, these questions should be leading in research, says Jori Aalders.

The Danish Diabetes Association also believes it to be important that early-career researches meet people with diabetes and learn about their needs and wishes from research.

– In that way, their future research can be improved to meeting people’s needs, says Tanja Thybo, Head of Research at the Danish Diabetes Association.

Future of Research

Maja and Tine hope to see more public involvement initiatives at future conferences.

– I hope that, with time, conferences like EASD invite people with the disease to participate and to be part of the programme. Not just in a separate session, but as a contribution: When presenting 5-6 studies, there could, in my opinion, also be a patient narrative. That would be powerful, says Maja Michelsen

Both organisations, the two women with diabetes and the scientific hosts had a positive experience.

– We should be exchanging ideas, knowledge and questions. Therefore, people with diabetes must participate in international diabetes conferences, says Tine Filges. 

DDEA will continue to take persons with diabetes and endocrine conditions to large scientific conferences and provide them with scientific hosts.

‘Public Involvement and Outreach’ is one of DDEA’s strategic themes. In May, DDEA held a workshop on Public and User Involvement in DDEA Activities. The catalogue will be released later this year together with a first action plan for each DDEA activity area (education, networking, grants, and communication).

To read more about DDEA Public Involvement and Outreach, please read the DDEA Strategy.