Our Patient Advisory Committee
During the MELISSA project, people with diabetes become active research partners who shape the developments of the MELISSA platform. For this purpose we established a Patient Advisory Committee (PAC) consisting of an engaged and diverse group of people with diabetes. Regular meetings are held led by the PAC.
Meet some of our PAC members:
A brief insight into Freek’s diabetes journey
I have been diagnosed with diabetes since 2004. First type 2. Later it turned out that it is type 1 diabetes. Since 2017 I have been injecting insulin several times a day. That's with every meal and snack. I don't use a pump. I exercise a lot and have an irregular lifestyle. By measuring a lot (Freestyle Libre 3) and keeping track of how much I eat, I have a good insight into the course of my sugar levels and the influence of carbohydrates. It is a challenge to stay within the acceptable limits of my glucose. I exercise a lot, and that has a long effect on insulin sensitivity. I have learned to deal with that well. For me, diabetes is not an exact science; experience is especially important. After more than 20 years of diabetes, I have no limiting symptoms due to my diabetes.
What is the role of the Patient Advisory Committee (PAC) in MELISSA?
The app is being developed by scientists and developers, many of whom do not have diabetes. By sharing the experiences of the PAC members with the development team, the app will be better connected to the daily practice and needs of people living with diabetes.
Why did you become a member of MELISSA’s PAC?
For me it is important to share knowledge about diabetes and to participate in research. I hope that this will contribute to more knowledge among people who know nothing about diabetes or that it will help people with diabetes. I am also interested in new developments in managing or treating diabetes. Especially if it makes living with diabetes easier. I learn a lot in Melissa.
In what areas of the MELISSA project do you provide your perspective and experiences?
My contribution is mainly from my own experience with the management of diabetes. What is striking is that the different members of the PAC often have similar experiences. My specific contribution is based on the fact that after 20 years I still inject insulin manually. Most other PAC members have already passed that period and use more advanced technics (like pumps) but know a lot about living with the pens. I think that the input of the PAC members will make the app much more practical.
How do you see MELISSA impacting diabetes care in the future? What challenges in daily life could MELISSA help people living with diabetes overcome?
The most important part of the app for me is that it can calculate the amount of carbohydrates based on simple photos that you take during meals. This avoids using the scale, tracking and manually calculating the carbohydrates. The app's self-learning ability to determine the right amount of insulin is also important. The app can therefore simplify the management of diabetes and better tailor it to the needs of people with diabetes. This makes it easier for many people to get diabetes under control, and it also gives them greater freedom to live with diabetes.
A brief insight into Kirsten’s diabetes journey
When I was diagnosed in 2001, everything changed. I was a mother to a 3-year-old lively boy, life was hectic and full of energy and no chronic challenges. In my free time I practiced competitive gymnastics, running and cycling, my work was demanding and very project-oriented with tight deadlines. My everyday life changed dramatically from the day I was urgently admitted with dangerously high blood sugar. I had lived my youth and adult life without thinking about diabetes, insulin and sport as well as the combination of diet, blood sugar control. The challenges were great, but I got fantastic help from the endocrinology department at North Zealand Hospital, so quickly I became strong and could live with the diagnosis.
What is the role of the Patient Advisory Committee (PAC) in MELISSA?
The role of the patient advisory committee is a that this group of patients are experts that give their professional advice and insights on a specific topic for which their expertise applies in a specific project stage.
How did you become a member of MELISSA’s PAC?
I was asked by a professor from the research unit at North Zealand Hospital.
In what areas of the MELISSA project do you provide your perspective and experiences?
I have provided input into setting up clinical trials, questionnaires, providing experience with insulin dosing as an insulin pump patient, regulation during sports, gardening, stress-related situations and carbohydrate counting.
How do you see MELISSA impacting diabetes care in the future? What challenges in daily life could MELISSA help people living with diabetes overcome?
It can help with carbohydrate counting and better insulin regulation.
Patient-reported outcomes
Patient-reported outcomes, such as pain and other symptoms, are commonly recorded in research but also in routine clinical care for symptom screening and to enhance communication. This is particularly relevant for chronic illnesses, such as diabetes, that impact patients’ quality of life and their activities of daily living. They are also used in clinical trials evaluating new medications and treatments. In diabetes research the patient-reported outcomes may identify and address existing unmet needs. It may also identify challenges and priorities in diabetes care that can enhance communication and improve outcomes. MELISSA will record and evaluate the patient’s perspective in the development of the platform. As soon as any patient-reported outcomes become available you can find them here.