Conversation with EUPATI Fellow Shirin Khalili

Shirin Khalili was born and raised in the US and has lived in several European countries since 1999. She has a PhD in molecular biology, several years of post-doctoral research experience, and several years of industry experience. In 2020, Shirin’s family was hit with the shock diagnosis of her brother’s advanced oesophageal adenocarcinoma, which took his life in just a few short months. Knowing that her knowledge and skills could be used to help people like her brother, she decided to become a patient advocate and freelance writer focused on medical devices. Her training on medical device writing began with EMWA in Berlin in 2022. After learning that the voices of patients with advanced oesophageal cancer are poorly represented in Europe, she gained basic End of Life Doula training and became a EUPATI Fellow.

When Shirin recently joined a closed professional online group, she saw an opportunity to use a similar approach to set up a secure, low-cost, ad-free platform for an online patient support group. She also closed a contract for confidential work that gives her crucial experience for the next steps towards her long-term goal of disrupting these patients’ standard of care for the better.

“The wind of change blows straight into the face of time, like a storm wind that will ring the freedom bell for peace of mind.” – Scorpions

Let’s hear from Shirin about her experience.

Could you share your story with us?

A few years ago, my brother passed away from advanced oesophageal adenocarcinoma. His experience left me wondering how many others suffer as he did, and what I could do to help them.

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

I happened to see a post on LinkedIn that a connection ‘liked’.

What made you want to join this programme?

I’ve lived in so many different countries that joining a national patient organization made little sense; it needed to be an international initiative. I had also already tried contributing to an umbrella organization but found a dead end.

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

Becoming a EUPATI Fellow was a way to demonstrate my commitment and find like-minded people across the globe. The time and effort it takes to complete the programme is an investment that weeds out imposters or those who happily take credit for others’ work. I noticed a distinct absence of political manoeuvring or suppression. This is a safe space where patient advocates can speak up, connect, and move forward.

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

I attended the 2024 Annual General Meeting (AGM), which provided an opportunity to express my frustration at the gap in representation of the needs of patients like my brother, who are in the palliative or hospice stage of their oesophageal cancer journey. I thanked EUPATI for including individuals in the AGM, not just patient organisation representatives, because I found organisations to be inherently political. An attendee later approached me in person to disagree on my characterisation of patient organisations and invited me to join the one he represented. It has indeed turned out to be an organisation that is not just performative but actually listens and takes corresponding action. Nine months after the EUPATI AGM, I was in the European Parliament speaking to MEPs.

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

This is a key investment in making change for the better. Even if you already know *everything* there is to know in the EUPATI Open Classroom (a rare feat), the *people* you meet at the Patient Expert Training Programme can propel you further and faster than you’d ever imagine.

How has this experience translated into your current work?

I rather see patient advocacy and my pre-existing professional background as complementary to each other. Patient advocates are masters of out-of-box thinking because they’ve had to figure out so much on their own. I’m a freelance medical writer and can provide insight that clients appreciate. I also use my professional skills in patient advocacy and  carefully control the overlap to prevent any perceived conflict of interest.

Would you like to share any other reflections?

For many patient advocates, there has been no pre-defined path and many pitfalls. EUPATI Fellows have a shared perseverance and a mutual encouragement that keeps us going strong.