Impressions from WECAN Academy 2019 delegates
(interviews led by Anna Wagstaff, Associate Editor CancerWorld Magazine):
Susanna Smith, UK
Recently took up a staff position in Kidney Cancer UK, having previously been a clinical research nurse
Why did you attend?
I only recently started working in patient advocacy. I have a lot of skills from my previous work as a clinical research nurse, but Kidney Cancer UK suggested I attend this to learn to use those skills to motivate patients. We want to have a patient ambassador scheme in our charity. So we thought this would be helpful.
Did you find what you need?
I’m always really interested in health economics. I’ve got a Masters degree in public health, but what I learned here was getting the economics to fit with what we are doing. Some of the medical and clinical trials stuff I heard I am familiar with in general, but it is nice to see it from a patient advocacy perspective, and see how relevant it is.
Also I learned a lot about project management. I do project management but I’m not very formal about it, and non-profits have a different way of working a than the national health system. It is like getting tools for your tool box.
How will you use what you learned?
We will use it to cement down how we can empower and engage patients in terms of volunteering.
I’m still trying to work out what it means not to work in the healthcare sector ‒ still healthcare but in a different way. So all these things are helping me find what I have already as tools, and try to adapt them, and try to learn new things.
Looking at a research paper is something I’ve done that for years. But now I want to interpret that to say: this is how it is going to help patients in the real world, and not just in a trial. It helps to be in this setting because I’m with lots of people who are doing what I am trying to do, and we can gain good experience from each other.
Anastasia Zakharova, Russia
Co-founder of the Russian Charitable Foundation NB (parents of childhood neuroblastoma patients)
Why did you attend?
Our group started as a facebook group for sharing information three years ago. Then last year we started a proper foundation. We are young and we have many plans and projects. That’s why we are here. We want to learn so we don’t reinvent the wheel. We want to follow some best practices.
Did you find what you need?
After this conference I will look at things with a different perspective, such as the importance of quality of life and advocacy in this field. I saw how much impact patient advocates can have, even in clinical trials, and learned about how to influence things and make your voice louder.
Also I’m here for networking. I made contact with Russian speaking colleagues from Ukraine and Georgia. In childhood cancer, which is rare, we need to cooperate to find solutions, because too few are diagnosed and we need to be together to make our voices louder. It’s a pity there was not so much information on childhood cancers, but many topics are common and in general it was very helpful for me.
How will you use what you learned?
It was mind-changing for me as a cofounder, and I need to think how to transfer that to the whole group. I need time to digest all the information and reach some conclusions.
Transparency is something I feel is important. Right now, in Russia we don’t have any policies with pharma companies, industry, professionals. We will definitely use some of what we heard in the sessions on good governance and about legal agreements with pharma.
We will also start to focus on quality of life.
Then there are other things, like GDPR and financial management, where I think we can do better by applying what we learned.
Olga de la Llana, Spain
Survivor of multiple cancers, living with Lynch syndrome, recently took over as chair of the sarcoma association AEAS
Why did you attend?
A few months ago I took over as chair of our organisation and I have not been trained. Good will is not enough, I need the know-how. We are all volunteers. We don’t get paid. There’s a bit of chaos. We need advice and counselling that I wouldn’t get anywhere else.
Did you get the information you need?
Yes. I’m getting a lot of clues about what to do, what not to do. How to get well organised and start to put my house in order.
The session on how to get organised, good governance, was particularly helpful. How an organisation should be structured. Understanding the legal framework: national laws, the organisations’ statutes, the principles and processes. Who is responsible and accountable for what? How should the organisation work? How often should you be in touch with other members of the board? Declarations of conflict of interests ‒ I think this is a fundamental issue.
How will you use what you learned?
One of the first things I want to do is to write to the members I represent to ask them what do they need? We must elaborate a good questionnaire with a few questions, to try to find out how we can be more useful.
Also, as a patient organisation we cannot just be there on our own. It is important that we collaborate with other patient organisations, and I think it would be in the interests of our patients. I’m really filled with energy and projects that I have to check and double check with others in my organisation to try to create relations with other people who are fighting for the same things.
Elisabetta Ricotti, Italy
Responsible for communication for Acto Alleanza Contro il Tumore Ovarico, a national umbrella for ovarian cancer patient advocacy groups
Why did you attend?
I am here to get trained so I can train others. I’ve been an advocate for six years. This was an opportunity to get an overview of everything so I can transfer the knowledge to the other people in my association.
Did you find what you need?
I knew some of the things, but they were presented very nicely, very schematically, so it was very useful.
I was particularly interested in the presentation on how advocacy groups can design research on patients. How to start from your objective and design the research and use the outcomes of the research, and present the results in different ways: not just tables and graphics but also infographics, videos, patient opinions.
I was also interested in the session on how to write a leaflet or booklet: how to develop good information, and present it in a simple way.
How will you use what you learned?
I have to evaluate what my group needs. We are one national association and five regional affiliates. Some of the chairs are doctors, so I won’t suggest they look at the session on reading scientific work. But I can suggest they look at how to manage the funding, and all the stuff about administration and governance of the association. Another chair is a journalist. She knows how to write for patients, but she doesn’t know anything about funding the work of her group. So I have to modulate my messages to different people. We use a Google platform to interact. I will talk to our chairwoman, and discuss individual training initiatives with the regional groups.
Anna Arnaut, Croatia
Patient advocate with GLIA brain tumour group
Why did you attend?
İ’m quite new in this so I wanted to learn what exactly what I can do and how it can be done. The association I work with is quite small, and when I joined they weren’t very active as they lost patients/volunteers due to the illness. Now we are slowly reviving it, and I was looking for information and advice that could help us grow and help more people.
Did you find what you need?
Definitely and much more! The academy was well organised. The participants were a great inspiration. The presentations were useful and I got lots of ideas that I would like to work on and implement in my country.
I was particularly interested in hearing why and how access to treatment differs between EU member states, and what advocacy groups can do about it.
How will you use what you learned?
We have several volunteers working in the organisation and we are all interested in different fields of advocacy. Some people are involved in lobbying to get much needed equipment for the hospital, some are interested in patient support, while I am more into patient education and information sharing. I will summarise everything we did at the WECAN academy and present it to our volunteers, so everyone gets the information they need.
Elena Butler, Spain
Advocate of AELCLES, a Spanish umbrella for leukaemia and blood disorders
Why did you attend?
I’ve attended many different meetings but this one is especially important for me because it is teaching us how to be an organisation, and about what sort of problems we could have, and how to sort them out, such as the data privacy laws, how to improve patient relevance of clinical trials and to ensure transparency and integrity, among others.
Did you find what you need?
I did. This meeting has taught us how to be a more efficient advocacy group, how to lobby policy makers, and how to bring passion into the work we are doing. I found the session on how to be a better advocacy organisation, on good governance, to be particularly useful. We are a small umbrella group, so it helps to know what is happening at a European scale that we can use on a national level.
How will you use what you learned?
There is so much information – I will go back to the slides and pick out what I think is most important for my group, and I’ll go through it all with members of my umbrella group.
I think they did an excellent job preparing advocates to go out into the world to spread the word. I’ve had the opportunity to attend other European meetings, but this one is really personal to me ‒ hopefully it will contribute towards a positive change to the work we do nationally.