At the end of May, I had the privilege to be invited to attend Novo Nordisk's European Diabetes Patient Advocacy Summit in Copenhagen, Denmark. See my disclosures at the end of this post. This was the second time this event was organised with the previous one taking place in Brussels - I wrote about that experience here
This event is very different to others that I’m fortunate to be invited to, in that, it is not an event for the individual with diabetes, it is targeted at representatives from diabetes organisations. There are many, many diabetes organisations from all over Europe represented, including Diabetes Ireland. My invitation comes from being one of the co founders of Thriveabetes, which I struggled to understand… until this trip.
At last years event, I struggled to introduce myself, because I have never seen Thriveabetes as an “organisation”. In my mind, an organisation was a legal entity that had paid staff, an office, a structure and resources. I’ve always describe Thriveabetes as a community group run by volunteers and therefore not an organisation as such.
It was only when I sat to dinner on the second night with strangers from other countries that I realised they were all just like me: people who formed community groups run by volunteers!!! I realised that Thriveabetes IS an organisation in that sense - we are an organised group of people!! This has been a revelation for me and has changed my whole thinking about what we do and who we are.
The social aspect of this summit was so much fun. I was lucky enough to be seated with a great group of people from France, Austria and Kosovo as well as the group at the table next to me with a looper included.
So why bring Diabetes Organisations together and what’s in it for Novo Nordisk?
Well, just like a diabetes peer support group where we learn more about living with our own diabetes from listening to the experience of others, diabetes organisations also learn from each other. NovoNordisk provide an unique opportunity to engage, share and discuss challenges, struggles and successes. They do this because it’s in their interest to have strong diabetes organizations.
“The time is right for making a difference in diabetes.”
Matt Regan, Head of Novo Nordisk Europe
The summit was opened by Matt Regan, Head of Novo Nordisk Europe again. I have to say I was a little disappointed in Mr Regan who is an Irish man that he didn’t seek out the Irish delegation so that we could determine his ancestry and who he knows back in Ireland that we might know too.
I am very new to the diabetes organisation space and I found that at last year’s event but more so at this year’s, that all of the information shared is new for me.
THE PATIENT VOICE OF THE FUTURE
Sarunas Narbutas, Lithuania, Chair of Youth Cancer Europe
The first speaker of the day was not from the diabetes world but is an extremely successful cancer advocate from Lithuania, chair and co founder of Youth Cancer Europe: Sarunas Narbutas. Sarunas was diagnosed with what was then an incurable cancer at age 18 years but decided to investigate if there was an alternative treatment. He discovered a clinical trial for a lifesaving drug for his cancer and was accepted into the trial. However, attending his treatment sessions he suffered from survivors guilt as he was the only patient at the treatment centre who was getting this drug.
He discovered later that very often the doctors decided who got what treatment even though the cost of the treatment was neutral. So, at age 18 he started a petition where he gathered an unprecedented 180,000 signatures - this was an online petition but it was before the era of social media. The success of this petition granted him an audience with parliament where he convinced government to make the policy change. (I really wish I had heard this story 18 months ago:-(
Some of the advice that Sarunus offered us as members of diabetes organisations were:
Patient advocates are expected to be the CEO of everything and that’s not fair. You should have the option to do what you care about and not try to do it all yourself. Pick a couple of areas and do it well.
It’s not about you and what you can do: it's much better to have 9 board members working 4 hours a week each than one of you trying to do 40 hours.
Lead the conversations with pharma and policy makers as they always try to get their agenda in front of you. And be wary that accepting pharma money puts you at risk of driving their agenda not yours.
For conversations with policy makers - champion the ethos that we need to equip ourselves with the tools of the future, meaning an intervention plan that will see results in the future. What will make the biggest difference in 5 years?
Have a diverse funding strategy
Turn ideas to reality using your volunteers
Have a good governance policy
Hire good project managers
Patient story is very effective to capture attention but plan your next step. It also has to have focus and include a call to action.
THE PERFECT PITCH IN HEALTH TECHNOLOGY ASSESSMENT HTA
Neil Bertelsen, Health Advocacy Consultant
HTA’s are something I have become very aware of since the HTAG Advice Note was the document that provided the HSE the basis of it’s decision to reimburse the Freestyle Libre. Read more here.
Neil described the HTA as a process by how we, as a society, decide what we are prepared to pay for in healthcare and often it’s not straightforward :-(
The HTA takes the evidence from the pharmaceutical company and the healthcare professional evidence plus how this drug or device will benefit the patient and is it worth investing in.
This workshop was really useful to come up with a process that provides the information about how this new drug or device will impact the patient. But also in identifying elements of clinical research that may have been missed by the other stakeholders. So as an organisation that represents patients it’s important to have a seat at this table.
CO-CREATING THE DIABETES AGENDA;
How do we build sustainable multi stakeholder partnerships?
PANEL discussion with John Nolan, Executive Director of Europe’s Diabetes Forum, Moti Perimutter, Israeli diabetes association and Sarunas Narbutas, Lithuania, Chair of Youth Cancer Europe
John Nolan, Executive Director of Europe’s Diabetes Forum, opened the panel discussion. However, members of the Diabetes Advocacy group which is facilitated by Diabetes Ireland had the privilege of meeting and hearing about John’s European Diabetes Forum earlier in the month. John believes “There is a big gap between what we can do in diabetes and what we actually do. The European diabetes forum wants to turn research into policy.”
The group wants to start with 3 Asks -
Data as in diabetes registry. If you don’t know how many people have diabetes in your country or how they are reaching their targets it’s extremely difficult to argue for improvements.
change the healthcare system
He called on countries to set up their own diabetes forum under the European diabetes forum to Bring all the stakeholders to the table and push policies forward.
Sarunas Narbutas, Lithuania, Chair of Youth Cancer Europe had another golden nugget piece of advice on how to convince policy makers to take diabetes seriously: Tell them “You made cancer as a priority. There are more people with diabetes and diabetes costs a lot more. Diabetes also needs to be a priority”. A very good point and one I intend to use. Thank you Sarunas.
UNDERSTANDING TYPE 2 DIABETES
Presenting the findings from anthropological research to drive increased understanding and engagement.
We were presented with three stories from people with type 2 diabetes to challenge the thinking that type 2 diabetes is as simple as eat right, move more and take meds. My involvement in our local support groups meant that I already knew this and that it’s always more complicated than that. But it was nice that Novo Nordisk were thinking outside the box here and learning about what it’s really like to like with this beast.
OUR COMMITMENT TO PEOPLE WITH DIABETES
CEO of Novo Nordisk, Lars Fruergaard Jorgensen
The global CEO of Novo Nordisk, Lars Fruergaard Jorgensen, attended the summit to open day two. He gave a candid interview to German Diabetes Online Hero and advocate, Bastian Hauck where he talked a little about his personal connection to diabetes.
But something he said stopped me in my tracks, while he talked about Novo Nordisk’s goals for the patient community he mentioned promoting “Safer use of insulin”. This is the head of a global provider of our life saving drug acknowledging that it is also dangerous if not used appropriately. To me, this means that I would very much appreciate Novo Nordisk promoting structured education for people with diabetes.
He was also ased “What does Novo get out of being involved with patient organisations?” His answer was that they gain knowledge of living with diabetes and this ensures that innovation continues because they want to continue to fix problems.
ONE TEAM, ONE GOAL
Phil Southerland, Founder of Team Type 1 and CEO of Team Novo Nordisk
I was so excited about the prospect of Phil Southerland being with us on day two. And if you don’t know anything about Team Type 1 or Team Novo Nordisk the please google it. Our very own Stephen Clancy from Limerick as one of there professional cyclists and every team member is a HUGE inspiration to any of us.
Phil took us through his living with diabetes journey, so far, through his dreams and achieving them. The first dream was his parents when they were told at his diagnosis that he would most likely die at age 25, so their dream was to keep him alive. His first dream as a young boy was to keep his eyesight. The next dream was to ride my bike and win! He did!
His advice to diabetes organisations was to tell policy makers that:
“Investing in people with diabetes now leads to a higher capacity workforce later.”
So, the above is the only photo I took of Phil because for some reason I lost a bit of my bravado to work up the ability to walk straight up to a complete stranger and say “Can I have a Selfie”. The decision to not seize this opportunity will always be a regret :-( Sigh
WORKSHOP - LEADERSHIP AND ENGAGEMENT OF LOCAL COMMUNITIES
This workshop was facilitated by the Polish and Spanish diabetes Association’s where they presented their case studies that involved the topic. They also shared what works for them and what doesn’t.
I definitely do agree that meetings with local decision makers tend to have better results on local issues. And I learned in this workshop what I could do at a national level but also what I can do for my community locally.
The issue that the Spanish diabetes organization is challenging currently is that prescriptions are approved or denied by local officers who do not have a background in medicine.
It’s also really good advice to do the following research in advance of acting:
What is the issue?
Why is it important (impact on pwd)?
Meet with different political groups: national and regional to promote parliamentary consensus and to get collaboration from the dept of health. Try to promote consensus between political parties.
The Polish diabetes association presented more general information on why having local activists are important and some suggestions on using them effectively.
Sometimes changing things at a national level can be an uphill battle, so sometimes, it is quite often more effective to change things locally which is why it's good to have community leaders.
Organisations should give their community leaders freedom to act and often your community leaders aren’t restricted by the rules and regulations that govern your organisation which can be beneficial. Yes, this does come with risks but for the most part it’s good work.
Always reward volunteers: medals are popular. And one of my biggest passions is that community leaders be provided with leadership training because it makes for more effective leaders and encourages professionalism.
Some of the ideas around our table came from Austria and their leadership training. It brought the three main diabetes Association’s in Austria together for this leadership training. They hired professionals to do this and Diabetes UK added that that training tends to generate better leaders if the content is focused on one area.
We also discussed what skills do our community leaders need?
Ability to learn as much as they can about what you are doing.
Ability to ask for help
The quote above from Durhane Wong-Reiger, Canadian Patient Advocate was really interesting in that you need volunteers with different personalities for different roles for example Maria from Novo Nordisk said “If the barbarian goes to the policy meeting it doesn’t work at all. But if the diplomats is in the room there is progress”
Don’t be too critical of policy makers - ie if you don’t get all that you want and you say it’s not enough then the politician who have worked hard for you will be less likely to continue on your behalf. Always thank them.
When your organisation is criticized it is usually to do with funding but don’t be intimidated by this. Be honest, explain it's not always possible to do things without pharma funding and be confident!!! Always know the risks when you accept corporate funding but that pharma is interested in strong patient organisations too.
As a learning experience for me as a representative of Thriveabetes but also as a volunteer who serves on Diabetes Ireland’s Advocacy Forum and is a diabetes advocate locally I found these two days very worthwhile and I couldn’t wait to get home and put some of what I learned into practice. Hopefully, watch this space.
CRAZY CONFERENCE BLOOD SUGARS
On a personal note, my sugar levels are always crazy when I attend conferences and this one was no different. Except for my glucose sensor alarm is on my phone now and not on my pump or a separate receiver. So I looked at my phone A Lot and did A Lot of correction doses :-s
It’s the combination of different foods and not being as active as I would be at home. Thankfully, as soon as I do get home everything goes back to normal to good.