In June, the EHC team grew by one more member when Thierry Hoppe joined as EHC Office Administrator. In this position, Thierry helps the EHC to manage its finances and human resources. For this edition of EHC Now!, we interview Thierry to learn more about him and his impressions on the EHC Workshop on Tenders and Procurement, which he attended last weekend in Istanbul.
Thierry, when we first met, you described yourself as a finance and HR manager, having worked on accounting, budgets, forecasts and payroll. So, I take it you like numbers – can you explain why, and what you like about your line of work?
Indeed, I prefer figures and numbers to words! I find numbers more rational and easier to understand. They clearly show reality. Words, on the other hand, are more versatile, they can be misconstrued and interpreted differently depending on the people who say or hear them and situations in which they are used. I also like the fact that finances and accounting reflect what is going on in an office. They give a very clear picture of what we’re working on, how work is organised and what the results are that we achieved. They can also indicate how office life should be organised.
For the last 12 years you were on the management team of the European CanCer Organisation (ECCO) – can you tell us a little bit about ECCO for those who of us who don’t know it?
ECCO is an umbrella organisation representing associations of doctors and other healthcare professionals treating cancers, that are organised either by the organ impacted by cancer or by medical speciality. I worked there for 12 years in a similar role. The main differences with EHC are that ECCO represented clinicians while EHC represents patients, and also the size of the organisation. We had a staff of around 25 people. In addition, everyone knows cancer and, sadly, most people are touched in one way or another by cancer. One of our main activities there was to hold a yearly congress, which gathered thousands of specialists from across Europe and internationally.
At ECCO, you worked with volunteers – we have this in common. What is your take on the volunteer sector and what was your experience with volunteers in your previous job?
As I mentioned above, ECCO was an organisation representing doctors and other healthcare professionals, and so our board was composed of clinicians volunteering within the organisation. They were the middle-men between the general assembly and the staff. They helped in steering the organisation’s activities. However, unlike EHC, we didn’t have as much contact with our members seeing that the main activity was our congress. We didn’t have so many working groups and committees or programs. So far, and I’ve only been here for a few months, I must say that it has been quite enriching meeting patient representative from across Europe.
A few more personal things. You are a French-speaking Belgian. What can you share with our community about your native city?
I come from Liège, it’s a border city in the south-eastern part of Belgium, and it’s very close to both Aachen in Germany and to Maastricht in the Netherlands. It’s also a university city, which gives it a very dynamic and young vibe. They say that people from my home town are quite proud and see themselves a little detached from the rest of Belgium. However, I have been living in Brussels for over 20 years now. This is where I raised my family.
At EHC staff level we’re very curious, can you tell us a little bit more about your hobbies and what you do in your free time?
I have two hobbies; one of these is cycling. I cycle most weekends, either in a group or alone. I particularly like this sport because it is both a team sport but also you are cycling alone. I’ve been cycling now for over ten years and last summer I crossed the French alps by bike. My other hobby is more something I do for fun than anything else. Some friends started a small start-up in which they buy grapes and make wine here in Brussels. It’s something that is already done in other cities but not in Brussels. I have a small share in this enterprise and am proud to be supporting Brussels wine-making. This hobby is quite recent, though, and we will see if it leads anywhere.
Thierry Hoppe is the second from the left. Here he is pictured during the EHC Leadership Conference that was held on June 2019 in Brussels.
So you’re a married man and have three children. Is there anything you can share about your journey as a parent?
I have three children in their 20s now, and I must say that everything went smoothly, raising them. I am not sure that I can give much advice because I think my wife and I are very fortunate with our kids! However, if I had to give one piece of advice to any parents, it would be to make sure that you treat each of your children as their own person and that you give them age-appropriate freedom and autonomy, so they have a margin to test new things and make errors.
Before starting to work at EHC, how did you think (if at all) about haemophilia or patient organisations? And have these ideas changed since you started?
I had not really had any direct contact with patient organisations before this job. In the cancer space, there are many patients organisations, but they usually organise themselves around the type of cancer or the organ impacted, so there’s a bit of fragmentation. Although EHC represents more than just haemophilia, I feel that there is more unity within the community. I also find the work the EHC carries out to be very constructive, and I like that it doesn’t just analyse the problem but comes up with concrete actions and solutions. I like that I get to work on numbers but that there is a very human face to them and that I can support a worthwhile cause.
On 6-8 September, the EHC held a workshop on Tenders and Procurement in Istanbul, Turkey. The workshop was aimed at central European countries and starts a new series of training on how to evaluate new treatment products, including non-replacement therapies. This workshop was the second EHC event you attended. What were your impressions of the weekend?
To be very honest with you, I didn’t really know what to expect. The title of the workshop didn’t mean much to me and the weekend was an eye-opener. I had no idea how haemophilia treatments were procured, and I realised even less that patients could play such an essential role in the procurement process! I liked that the workshop lectures gave general principles that can be tailored to each country’s needs and organisational structure. I also really see how it can be quite tricky for national organisations to find people who will have the time and interest to develop skills and expertise in health economics and procurement processes. It’s very complicated, but it’s so worthwhile. I like that the EHC gives out tools and education in this area. I particularly liked the group exercises carried out during the weekend. It was interesting to see what participants consider to be of importance in the treatment product purchased. I also really enjoyed the session on case studies and to learn what is done in different countries. I must say that before coming here I had no idea that patients could take such an active role and lead advocacy efforts.
Thanks Thierry! We’re delighted to have you on the EHC team and I’m sure our community will soon enjoy getting to know you better, as much as we have!
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
