Conversation with EUPATI Fellow Lisbeth Snede

Tell us about your background 

I am an entrepreneurial patient advocate in Denmark and internationally, with a significant personal and professional journey in healthcare. My involvement began in 2000 when I established a pioneering diagnosis association to improve the lives of people with chronic diseases, driven by my own experiences with chronic rheumatoid arthritis.

In 2018, I co-founded ‘Patient in Focus’ to center patients in healthcare decisions and discussions, advocating for patient rights and wellbeing. I also established the Patient’s Unit to highlight patient voices and experiences. Additionally, I contribute to national and international organisations like EIT Health, EUPATI, and EU-X-CT to promote health research and patient involvement.

I run Danish blogs ‘Livet med gigt’ and ‘Leddeggigtprotalen’ at Roche, sharing my experiences with chronic disease and providing advice and support to patients and carers. As a speaker, I offer insights into life with chronic illness and my journey as a patient advocate.

I also work as a consultant and advisor for various healthcare organisations, contributing to patient engagement strategies, project evaluations, and developing questionnaires for clinical trial access.

Personally, I live in Denmark with my family and am active in golf and other leisure activities. I am dedicated to improving the lives of people with chronic diseases through education, support and personal endeavour. My mission is to create a more inclusive and understanding society where chronically ill people can live a full and fulfilling life  both in the healthcare sector in Denmark and internationally.


How did you hear about the EUPATI Patient Expert Training Programme?

I was introduced to the EUPATI Patient Expert Training Programme through another Fellow who thought I would benefit greatly from participating. They suggested that the programme could give me a more international insight and strengthen the skills I already possessed.

A good reason to join the EUPATI training programme is the opportunity to improve my ability to influence and contribute to the development of medical research and health policy on an international level. By participating in the programme, I can gain in-depth knowledge of drug development, clinical trials and regulatory processes, which will enable me to represent patients’ perspectives more effectively in collaboration with researchers, pharmaceutical companies and health authorities. This can lead to better treatments and a stronger voice for patients in decision-making processes that directly affect their quality of life.

Participation will also give me access to a network of other patient experts and professionals from across Europe, which will open the door for collaboration and sharing of best practices across borders. This network can be invaluable in my work to promote patient engagement and ensure that patients’ needs and perspectives are heard and taken into account at all levels of healthcare.

Tell us more about the close network you create with other EUPATI Fellows – why did you feel this was important?

Through my involvement with EUPATI, I have created significant networks with other EUPATI Fellows, which has been of great importance both professionally and personally. After many months of hard work, I often felt alone in my work as a patient advocate.  This led me to start my own Cohort 5, which was the beginning of one of the main reasons why I decided to establish the network globally.

The network also serves as a social platform where members can share experiences and support each other both professionally and personally. This has created a strong community where we can inspire each other and share positive energy. I have participated in and organised network meetings where we share knowledge about the latest initiatives and courses from EUPATI. This has given me insight into the work of other patient advocates and the challenges they face on a daily basis. These networks have been essential for my development as a patient advocate and have given me the opportunity to contribute to a stronger and more cohesive healthcare system where patients’ voices are heard and respected.


Can you share a core memory / experience you’ve had since joining EUPATI?

One of the most memorable experiences I have had since joining EUPATI was participating in PEOF together with Board Chair Ingrid Klingmann in a joint project we are both part of. PEOF showed that there is a great need for us as advocates to stand together and make our efforts visible. It also became clear that we must be careful not to take patients for granted as advocates, as there are currently not the necessary working conditions that are needed.

On a more personal level, it was a great experience when the entire Cohort 5 met in Madrid for exam week. It was a unique opportunity to physically meet so many amazing people who to this day have a huge impact on my working life. These experiences have strengthened my understanding of the patient advocacy role and given me valuable relationships that I cherish.


Do you have any advice for people looking to join this programme?

A piece of advice for those considering joining the EUPATI programme is to seize the opportunity to become part of a dynamic and international network of patient advocates. EUPATI gives you a deep understanding of medical research, clinical trials and regulatory processes, enabling you to effectively represent patients’ perspectives. However, please be aware that there may be costs associated with the programme and you may need to seek funding or self-pay to participate. This investment in your education will be invaluable to your future work as a patient advocate.


You’ll be speaking at one of our sessions at the EUPATI AGM in September – what made you want to be a part of this event? Anything you could tease to make others excited to join?

I will be speaking at one of our sessions at the EUPATI General Assembly in September to explain why the EUPATI Alumni Network is a natural extension of the EUPATI programme and why it is important for those who have completed the programme to join it.

The EUPATI Alumni Network offers an invaluable platform for continued knowledge sharing, collaboration and networking within a specialised career path. The network will strengthen our collective voice as patient advocates, enabling us to influence healthcare policy and practice more effectively. Together we are so much stronger. I hope to see you there!

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