It seems there's always a diabetes conference of some sort being held somewhere in the world -- and of course not all of them are very earthshaking. But the 5th International DAWN Summit held in the Netherlands in early April may be an exception.
It's an annual gathering of a multitude of international players in the diabetes world, led by the International Diabetes Federation (IDF), International Alliance of Patients' Organizations (IAPO), the Denmark-based Steno Diabetes Center, and Pharma giant Novo Nordisk.
Luckily our friend Riva Greenberg, a fellow longtime type 1 and journalist who writes at The Huffington Post and many other places, was able to attend this Summit and report back to us exclusively on the wholly new perspective these experts are (finally) embracing:
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Special to the 'Mine by Riva Greenberg
April 7-8, Noordwijk, The Netherlands: Last month more than 240 physicians, psychologists, policy-makers, people with diabetes (PWDs) and researchers from Africa, the Middle East, Israel, India, Latin America, North America and Europe, gathered outside of Amsterdam. They came together for the 5th International DAWN Summit to change diabetes care; I was among them.
The Summit's focus was to measurably improve education, support, treatment and policies for the world's 382 million people with diabetes, including making person-centered diabetes care a reality.
The Summit was prompted by pharmaceutical company Novo Nordisk's DAWN2 (Diabetes Attitudes Wishes and Needs) study, which examines the well-being of people living with diabetes and the psychosocial aspect of managing the condition.
While the Summit was a call for global partnership and action, it was also a silent admission that the current model for diabetes care doesn't work very well. Part of why it doesn't work very well is because it largely ignores the psychosocial aspect of living with diabetes.
Here's a video about the study that shows what we're facing with diabetes care around the world:
Key findings from the DAWN2 study, as told to me by Novo Nordisk's SÃ¸ren E. Skovlund, research director of the study and global director of patient research and engagement, revealed:
- A lack of support for people with diabetes from many different parts of society
- Limited access to, and availability of, diabetes education for people with diabetes and their families
- Diabetes related emotional distress both in people with diabetes and their families
- Poor communication between people with diabetes and healthcare professionals
- Diabetes related discrimination
Specific stats from the DAWN2 study:
- 49% of people with diabetes and only 23% of family members participate in diabetes education
- 45% of people with diabetes experience distress
- 40% of family members experience emotional distress related to concerns about diabetes
- 56% of health care providers would like more training in communication and motivation
- 59% of health care providers would like more training in the psychosocial aspects of care
Further results of the study can be found here.
Exploring the Psychosocial Side
Novo Nordisk is the frontrunner among diabetes pharmaceutical companies investigating the psychosocial aspect of care as an avenue to better health.
The DAWN2 study is Novo Nordisk's second such study -- it looks more closely at diabetes' impact on families and the interaction between PWDs and healthcare professionals than the original DAWN study in 2001.
"We did the second DAWN study because we saw an urgent need for a new care model," said Skovlund. "One that gives people with diabetes the right to the best possible treatments, education and psychosocial support, and to be free from discrimination and diabetes stigma so that they can live full, healthy and productive lives."
The health benefits of addressing the psychosocial aspect of diabetes care has been confirmed in numerous recent studies, including peer support programs and being seen by a physician skilled in communication and empathy.
Unfortunately the very expertise physicians have, being experts on disease states, is often a limitation when it comes to chronic illness. Many providers put their attention exclusively on micromanaging the biomedical aspects of the disease, while people with chronic illness yearn to be seen, heard and supported.
Perhaps then one of the most surprising findings from the DAWN2 study is not surprising at all -- 52% of healthcare professionals report asking people with diabetes how diabetes impacts their lives while only 24% of PWDs said they were ever asked.
The DAWN2 study also reveals another aspect of well-being worth investigating: positive experiences. Almost 30% of people surveyed reported that diabetes has had a positive impact on their lives, and the study contains more than 15,000 anecdotal stories that shed light on opportunities people with diabetes see for improving their lives.
Studying how people find something positive in their illness can teach us much about how to help more people create similar strategies for, and experiences of, well-being.
Setting a Precedent?
"What happened over these two days is a tipping point," said Skovlund. "The dedication and truly collaborative atmosphere that arose across cultures, boundaries, disciplines and sectors, among all the various stakeholders from all corners of the world, is a strong proof point now for every country that it is possible to make person-centered diabetes care a reality worldwide."
For me, the DAWN studies and Summit set an enviable goal and precedent for other chronic diseases.
Over the next several months outcomes of the Summit including ideas, tools and programs generated, action priorities and strategies for partnership, will be published and made available to partner organizations and the general public.
Many Summit attendees have already made commitments to expand or create greater awareness, education, health professional training and sources of support in their country.
Personally, I'm delighted to see the emotional well-being of those living with diabetes come to the center of the care circle. As someone who wrote her first book to help people with diabetes develop the emotional strength to manage their condition, it cannot be overstated: chronic disease requires a different care model -- one that focuses on the person as well as the condition.
The Summit's aim -- a shared global commitment to improving quality of life for those with diabetes -- was summed up for me in a closing statement delivered by passionate and eloquent Sir Michael Hirst, President of the IDF and Chair of the Summit.
"It doesn't matter who clears the road in front of us, all that matters is that those with diabetes come out winners."
By 2035, it's projected 592 million people will have diabetes. We'd best clear the road, now. The DAWN studies and 5th International Summit are two initiatives helping us do so.
Thanks for the great coverage, Riva. It's exciting to see this global call-to-action on addressing the real, day-to-day challenges of diabetes care!