Insights, Inspiration and Setting Direction - Diabetes Organisation Summit


Last week, I was invited to attend the European Diabetes Patient Organisation Advocacy Summit (complete mouthful and no hashtags) in Brussels sponsored by Novo Nordisk. My invitation was because of my involvement of Thriveabetes Diabetes Community & Conference (PS have a look at our new website. It’s swit swoo!!!!)  and because of my involvement with Diabetes Ireland as a volunteer for sooooo long.

The summit was for diabetes patient organizations from all over Europe and even though attendees were either members of their association’s boards or paid staff, approx. 50% of the attendees were people with diabetes. There were 30 countries represented.

DISCLOSURE - Novo Nordisk paid for my travel & accommodation expenses ONLY. They have not asked me to do anything other than to participate in the discussions and activities at the conference. I have received no other payments or “gifts”.

My companions for the couple of days were Clair from Diabetes Ireland’s Western Regional Office and Michael from Novo Nordisk Ireland.



The summit was moderated and chaired by fellow person with diabetes, Bastian Hauck who is the founder of the German diabetes online community #dedoc and also a board member on the German diabetes association and on IDF Europe.

Novo Nordisk's Head of Europe and originally a west of Ireland man, Matt Regan began the summit with a warm welcome and explained what Novo Nordisk's objectives were with this summit and their commitment to helping organizations advocate for people with diabetes.

Matt mentioned that “Diabetes seems to have become a less urgent issue” and with public healthcare services tending to be “penny wise and pound foolish” (my words not Matt’s) spending more on treating the complications of diabetes than in education, service delivery, devices and the newest treatments the results is it’s actually costing public health more and people are suffering.

According to the International Diabetes Federation prediction as many as 438 million will have diabetes by 2030. I hate this phrase and reminder but Matt stated that knowing this number should be sending a major wake up call to what the future of public healthcare spending is going to be unless they become pound wise.

How do you get the attention of a policymaker?

This topic was presented by Christel Schaldemose, Danish politician and Member of the European Parliament, MEP. Christel has been in involving in campaigning on behalf of diabetes within the European Union for over 10 years. Christel is also co-chairing the EU Diabetes Working Group.

I feel like we already knew the answer to this in Ireland because our politicians are really accessible. They do reply to emails and give meetings to their constituents. It’s the step after we convince our politicians of what we need that we get stonewalled at.  

So just to sumarrised what Christel shared:

  • “If we (policy makers) treat diabetes well, we can also make a difference in other health area such as heart disease, etc.” This is Christel’s personal reason for taking an interest in diabetes.

  • Her answer to “How do you get the attention of a policymaker?” is simple, obvious and we’re already do it in Ireland. Get in touch! Call, email meet with them as she doesn’t “know a politician who doesn’t want to help”.

  • She also pointed out that it’s important that politicians learn more about diabetes because she believes most don’t know much about it. She said that until she was approached by the Danish Diabetes Association she was completely in the dark about the realities and seriousness of living with diabetes.

Important Question from an Attendee

One of the attendees asked a question that I feel is important to share

“when you want information from the patient perspective where do you get it?

Christel answered, without hesitation, that she turns to the diabetes association because they provide correct and credible information. However she did quote Maya Angelou to point out it is important to share your personal story also.

“At the end of the day people won't remember what you said or did, they will remember how you made them feel.”
― Maya Angelou

How do we make a difference for people with diabetes?”

Next up: a Panel discussion with a difference. As each panel member was introduced they were given 5 minutes to answer “How do we make a difference for people with diabetes?” before taking their chair and moving into taking questions from the floor.

First up was Matt Regan, Head of Europe, Novo Nordisk again. However, as he had already touched on this in his welcome he just added a more direct response:

Matt’s answer to how NovoNordisk will make a difference for people with diabetes:

  • Bring the very best innovations to patients

  • Raise the innovation bar

  • Make sure the innovations make a difference in the lives of people with diabetes

  • Help you (diabetes organizations) build capacity, strategy and advocacy

Our next panel member was Dr Niti Pall is now a medical director of KPMG’s Global Health Practice bringing universal health care to Asia. Dr. Pall is a GP, a board member of Diabetes UK, is chair elect of the International Diabetes Federation IDF, and a mum to a now 23 year old with type 1 diabetes who was diagnosed at age 2. Yeah, I know! Wow!

Dr. Pall’s answer to how Health Care Providers will make a difference for people with diabetes:

  • A new health consumer/patient has emerged globally, in both the developed and developing world - the digital patient. “You want access to hcps 24/7 because you live with diabetes 24/7” Healthcare seems to be the slowest to move into the digital world and is being left behind. Let’s not ignore the digital world.

  • “The world is more democratic now, the old hierarchy and patriarchy is going. “Diabetes association should be engaging more with health care professionals where the are studying. They don’t meet patient until they’ve completed most of their learning”

Next to the stage and representing the diabetes association voice on the panel was the President of The Swedish Diabetes Association, Cajsa Lindberg. I had the pleasure of meeting Cajsa the evening before the conference started and she is an impressive young woman. As a fellow PWT1D she is so passionate about what she does and loves that she has been able to make it her career.

Cajsa’s answer to how diabetes organizations will make a difference for people with diabetes:

  • Organizations need to be in the room and at the table where decisions are made.

  • We also need ways to develop sustainable funding

  • Make diabetes more urgent. (This may be repeated again as a part theme for the conference)

It was a lively discussion with many little nuggets that I just didn’t have time to tweet. In particular, the point that Dr. Pall responded to Matt Regan’s suggestion to pushing innovation with “Innovation isn’t innovation by just pushing it. We have to implement it.”

And Matt Regan’s excellent and sensible point that “We need to become an Outcome focused healthcare rather than cost focused healthcare”.’s Changing the Health Profile

Next we had a presentation from Charlotte Summers, who is Chief Operating Officer at which is part of Digital Diabetes Media, a private company with an established 'community-profit' culture. They have 39 employees and doing a lot of good work to change the health profile for people with type 2 diabetes through their Low Carb Programme where 1 in 4 people place their type 2 diabetes into remission saving the NHS £835 per person, per year in prescription costs.

DDM uses AI technology and social listening analytics to develop education programs, useful and informative content, apps and interactive tools to aid the community.

There were a lot of questions for Charlotte and a little confusion in the attendees in the difference between and Diabetes UK. Bastian added at the end of the Q&A that it was important that “organizations should be aware of what other actors and players are doing in the space.

Including the patient voice in decision making

The last formal presentation of the day was titled “Including the patient voice in decision making” and specifically around Health Technology Assessment HTA by Barrie Chubb, Head of Health Economics and Outcomes Research Europe, @NovoNordisk.

This is an area that I’m only little familiar with since the Libre Reimbursement Scheme was based on an Advice Note from the HSE’s Health Technology Assessment Group HTAG where there doesn’t seem to be any patient voice.

Barrie advised that it is very important to have a patient voice in these assessments to evaluate quality of life impact of medical devices and medicines not just a review of the clinical and cost effectiveness.

It just so happens that the HSE are working on a draft of Guidelines for Patient Organisations to provide input to an assessment of a new technology. Something (else) to put on Diabetes Ireland’s already stretched “To Do” list.

Strengthening the National Patient Voice

The last formal presentation by Nicola Bedington, European Patients’ Forum, took place on day two but it was a continuation of the Amplifying the Patient Organisations Voice presentation with a tonne of resources such as the EUPATI European Patients Academy and the PARADIGM (Patients Active in Research and Dialogues for an Improved Generation of Medicines) Learning resources which are available to anyone.


I’m so glad that this was part of the programme because it was so interesting to find out more about the diabetes associations in other countries and how they do things.

French Federation of Diabetics (France) National Survey

The French Diabetes Association has 19 paid staff members and 1500 volunteers. Their “Best Practice” presentation was an extensive nationwide survey to find out what their members wanted also referred to as “The Book of Complaints”. Ouch, but realistic! This is still under way but producing good results. Bastian Roux, from the organisation pointed out that their reason for doing this was because “We need to have people who are backing us not fighting us”. And yes the best customer service finds out what the customer/member wants and finds a way to deliver it.

The National Diabetes Patient Association in Bosnia-Hercegovina - Synergy with Other Disease Groups

The most interesting element of Bosnia-Hercegovina’s diabetes association was this:

“Non Government Organisations should join efforts with different stakeholders to focus on different education and advocacy of both healthcare professionals and people with diabetes; to achieve more complex but complementary goals simultaneously, such as Diabetes & Tuberculosis (TB)”.

Bosnia is working with the TB patient group at the moment to “find synergies between other disease groups and learn from them.” - Nesad Seremet, National Diabetes Patient Association in Bosnia-Hercegovina. However I am wary of what Cajsa Lindberg said earlier that working with other patient groups can become a competition of human suffering which is not good and not productive.

DIAKTIV Association (Czech Republic) - Patient Council Advisory to Health Ministry

Diaktiv is a patient education and advocacy group that has established a patient organisation network or a patient council who are now advisors to the health ministry. Their aim was “To be a partner in the process before the decision is made.” - Vlastimil Milata, President of Diaktiv and PWD

This came about when the Pharmaceutical Industry supported the cooperation with other stakeholders in the healthcare system and consequently the establishment of the patient council in the ministry of health.

BvdG Foundation (Netherlands) - Walk and Talk Programme

Bass Van de Goer is founder and director of BvdG Foundation. In 1996, he won and Olympic gold medal in volleyball for The Netherlands. In 2003, he was diagnosed with type 1 diabetes. He was inspired to start the BvdG Foundation to enhance the quality of life of people with diabetes through exercise and movement. But with a twist!

First find a healthcare professional to commit to one hour per week of walking. You saw the words correctly: a HCP not a person with diabetes.

The HCP leads the “Walk and Talk” group every week for 20 weeks walking programme leading up to a finishing event which this year had 4,000 people participate. It gives pwd more time every week with their HCP and the HCP recruits participants. It’s also very low cost.

The Danish Diabetes Association - What defines a professional patient organisation?

The Danish Diabetes Association blew me away but it is a very, very different culture there and I know what they have done just wouldn’t work in Ireland but it was interesting nonetheless.

Denmark has a total population of 6 million people, of which 225,000 have diabetes. They are mostly membership funded with 95,000 members. About 31% funding from pharma. They do little or no public fundraising but they do have a lottery with sports groups where the sports clubs get a commission.

Their ethos is “Everything we say is based on fact or science or what they patient says”.


Day 2 was about identifying challenges, objectives, unmet needs and barriers in our own countries and what to set as a priority in our countries. This is where myself, Clair from Diabetes Ireland and Michael from Novo Nordisk Ireland discussed the loooooonnnng list of issues in diabetes care that I had prepared. We were then tasked to come up with one idea of where to start first and a vague plan on how we go about it.


We pitched our idea to another country who gave us feedback to make improve on the idea. Our match-making country was Diabetes UK and those guys were non-stop ideas, feedback and offers of help. Which is good because I think we are going to need it.

Team Diabetes Ireland and Thriveabetes left Brussels with a new sense of optimism and maybe even a plan to present to stakeholders and member that will get stuff done. Plus a commitment from Novo Nordisk to help make it happen. So fingers crossed. And hopefully more to come on this.