TODAY WE BRING YOU AN INTERVIEW WITH MARKO KORENJAK, PRESIDENT OF ELPA, THE EUROPEAN UMBRELLA ORGANISATION FOR LIVER PATIENT ASSOCIATIONS.
Let’s start with the essentials. Who is Marko Korenjak, for those who don’t know him?
Marko Korenjak is the current president of European Liver Patient association, member of Advisory Forum of ECDC, Patient and Consumer Working Party at European Medicine Agency, EASL Policy and Public Health Committee, EASL Task Force on Liver Cancer Prevention, WHO group on HIV, TB and hepatitis in Europe, Viral Hepatitis Prevention Board, representative of patients in 10 medical research projects. He holds two master’s degrees, first in business and economy and second in international relations and diplomacy. In 2017 The Economist research unit named him as one of the 18 most influential persons in hepatitis elimination in the world.
Marko is a patient living with chronic condition – von Willebrand disease type 3. During his treatment for vWF disease he was infected with hepatitis C. In 2009 he went to treatment of hepatitis C with interferon and ribavirin and later he wrote a book about the treatment and experienced side effects.
We could say that as president of ELPA you are the highest representative of liver patients at European level. What does this responsibility mean?
Yes, we could say so. It is a position that tests all my abilities and knowledge. I communicate every day in at least 3 different languages, manage expectations in several different groups that include not only people from different language groups, but also different cultural backgrounds, try to be inclusive and positive as possible in internal communication and strict in negotiations with outside partners and following the highly restricted communication with pharma companies and Belgian laws for NGOs.
I was honoured by ELPA members to trust in my abilities to lead the association in the presidential mandate and I need to say that today the association is completely different that the ELPA at the start of the mandate.
Whenever I need extra motivation, I remember the time when I was the patient in the hospital needing help myself and not being able to be a voice for others. Therefore, whenever I can and I have the possibility I work my best having the interests of the patients in mind.
What are ELPA’s objectives in the medium and long term?
In the medium term, we would like to see the end of covid crisis and going back to new improved way of work with the acquired learnings from this period. We need to work towards making presence of ELPA representatives in Brussels more visible and we need to follow strategy of management of the communication to the highest level of decision makers in Europe.
In the long term the management of ELPA should be focused into creating even more opportunities for members of the association to share the good praxis, develop multi-national projects, support each other, and of course to increase of the participation in the medical research project Horizon Europe.
We need to make sure that EU institutions and decision makers understand that patient participation in the decisions is a must. Patient contribution to the research and healthcare at a highest level is unique and equally important as from the experts. We should continue to build up ELPA that patient representatives would like to be part of and to have such a high quality of work, that will be impossible to ignore it from other outside partners.
There are big differences in the context of certain countries represented in ELPA. Is it possible to realise projects that are equally valid for all?
Yes, there are several differences in the context of the countries. The best way forward is to develop projects that would include the uniqueness of specific countries or regions. The equality for all depends on the understanding of specific context that can only be provided by close collaboration with local patient NGO. The development of work program for every year includes several projects that are very different and can be beneficial in one part of Europe and not in other. For example, ELPAs collaboration with Spain rests on very specific collaboration with medical experts on highest levels in European Union. The same is done in France and could be done in more developed countries. On other hand the projects we had in Cyprus or Poland had different goals that were set after exploring thoroughly the landscape of liver patients in the country.
It is important for us and every future ELPA members to acknowledge our differences and explore the projects that can be beneficial in specific country. This is only possible with respect for diversity, high commitment, open communication, and dignity to all ELPA members.
What are the major challenges facing European liver patients today?
In this serious time of pandemic, we have no clear data on how protected the most vulnerable liver patients are. We expect more data from medical experts on the protection of second or third dose of vaccination against Covid 19 for persons with transplanted liver or serious rare liver diseases.
The pandemic has shown that decision makers on highest levels need to engage more with patient associations and use the wide network also to inform the public about the work they are doing. There are several problems we could avoid if we had smarter communication strategies and regional and national levels. We can see a big misunderstanding of the work that is done by professional association, people are not aware of the mandate of EU institutions and why is important to search information on the sites you can trust.
What are the real benefits for a national association to belong to ELPA?
In the last years ELPA has moved from an association that was focused into its own work into an association that is here for members and patients on the WHO Europe level.
In 2020 ELPA management board decided to, first time in ELPA history, actively support the patient related programs of ELPA members and we will not only continue this praxis, but also increase the level of support in 2022 and 2023. The members are welcome to participate in 8 different working groups, to add their project ideas to ELPAs work plan if they are involving more ELPA members in joint project, state any kind of suggestions to possible work of ELPA and the management board will discuss it in detail to see what can be done.
In the years to follow we need to increase participation on national levels, according the to specific needs of different patient communities. It should be our commitment to use the expertise of our members, experts and supporters to improve the position of liver patients in WHO Europe region.
What is the Covid-19 crisis doing to an organisation like ELPA?
It was unbelievable destiny that the new mandate of ELPA management board and ELPA president started on rocky ground in 2018. The ELPA management board decided in January 2019 that we will do anything we need to keep the association running and that the stakeholders should see the need for a big regional patient association as ELPA. During 2019 ELPA management board members and ELPA president attended more than 200 times to several meetings – to present new ELPA management structure, to negotiate new deals for 2019 and 2020 and to build up personal connections to decision makers. I was never home because of constant travelling, but it was extremely important for ELPA.
In 2020 the world has closed because of the new pandemic and at ELPA we used all the personal contacts we had in 2019 to rewrite the work plan, make it more flexible, online, modern in the view of new way of work. In the first quarter of 2020 ELPA has present to all our supporters new work plan that was made with activities made online. In this year ELPA management board made more than 70 decisions on how to lead ELPA and how to adopt to new conditions. The result of the activities in 2020 was that this is the most successful year in ELPAs history.
What legacy would you like to leave as president of ELPA?
I had a rough start into my term as president and we managed all together to tackle all obstacles. This was only possible by good collaboration and delegation of the work within the members of the board, leaders of the working groups, ELPA members and new ELPA staff in Brussels. I do think that the important presentation of the high quality of the ELPAs work was confirmed in 2021 when we got ISO 9001:2015 certification for the quality management system we have built up in time of last 15 months. We are today the only patient association in Europe with official certificate of our quality management system. We got the certificate for the period of 3 years, and we need to prove to outside auditors that the quality of management of ELPA is something we use and it is getting better.
So, the legacy of this term as president would be that we need to work together as a team. – together we are stronger. If we do so – we can achieve anything.
Here is our quick quiz of informal questions:
Marko´s favourite food is….
Mediterranean cuisine. I like trying different cuisines. In Spain I like paella very much.
A place to go on holiday
A film or book to enjoy
Book: Under the free Sun. Author: Fran Saleski Finzgar.
(Slovenian historical novel about life under Byzantine rule)
A special childhood memory?
I used my mom lipstick to change the colour of our kitchen.
A referent in his life…
The several talents of Leonardo da Vinci. I admire the research of Nikola Tesla.
In general, I admire people who work not only for them self but also significant contribute to the wellbeing of others.