To the People Leading the Mission

An open letter to Patrick Ryan following his testimonial at the OHDSI Europe To the People Leading the MissionSymposium 2026

Last week I attended the OHDSI Europe Symposium in Rotterdam.

Having co-organised the event ourselves the year before, it was wonderful to simply be there this time — to take it all in.

The programme was outstanding (→ link to the symposium website: all sessions can be rewatched).

The energy was inspiring, the people were hopeful, and the community felt alive.

But I don't want to write a blog about the symposium.

I want to give something back — in response to a moment that stopped me in my tracks.

A moment when Patrick Ryan, global lead of OHDSI, offered the audience something rare: genuine vulnerability.

Why I almost didn't write this

I've gone back and forth about how to approach this.

A steady stream of thoughts tried to convince me it would be better to say nothing.

What will Patrick think?

What will others think?

Is this mine to share?

And yet — during that conversation between Patrick and Renske, so many thoughts and feelings moved through me that there was a quiet, deep knowing: I needed to write this down.

Maybe what follows is mostly a reflection of my own emotions and experiences projected outward.

Maybe I'm writing this primarily to myself.

But if that's the case, then this letter is for me — and for every "agent of change" who carries the weight of wanting to make the world better.

For anyone who has taken on the chaos and grief of the world as their life's work,

and who searches for solutions while sometimes forgetting to look after themselves.

What Patrick shared

In an interview with Renske (Los), Patrick shared his vision of a future reality:

a world where trustworthy, data-driven insights are rapidly and openly available to everyone who needs them.

He described his dream for the community as follows: to produce reliable evidence at scale—for all medical interventions, for all health outcomes, across all databases around the world. It’s about building a global pharmacovigilance system that actually works for everyone.

A world where care improves,

uncertainty decreases,

fear diminishes

— and where the suffering and helplessness so many people feel today is reduced.

To illustrate why this mission is urgent,

Patrick shared three deeply personal stories:

about his grandfather,

about his daughter,

and about himself.

Three memories in which Patrick experienced pain, powerlessness, grief, confusion, and frustration — all made worse by the absence of reliable, data-driven insights.

In doing so, he exposes an inconvenient truth:

People are dying.

People are suffering.

People need better health and care.https://www.google.com/search?q=HIER_DE_LINK

And that is urgent.

We dream of a world where trustworthy, data-driven information is quickly accessible.

That is the ultimate goal of OHDSI. To make that possible — so that care improves, uncertainty shrinks, anxiety fades, and we can better care for ourselves and the people we love.

Patrick invited the community to help him move toward that dream.

He made a specific ask: if this vision resonates, he wants us to speak up.

He asked us to post on the OHDSI forums to say we support the mission and, more importantly, how we’d like to contribute.

It is a call to move from dreaming to doing, together.

That mission is also my mission

I won't list everything I'm working on here — that would be a different blog.

But Patrick's mission is also mine, and it drives much of what I do:

co-hosting workshops to grow the OHDSI community,

working on real-world evidence studies,

guiding consortia in building their data strategies with OHDSI principles as a compass,

and co-leading the OHOSI Belgium community.

But none of that is what I want to write about today either.

What moved me most wasn't the strategy or the vision.

It was Patrick himself — the human being standing in front of us.

And I felt a strong urge to say some things to him.

Words I sometimes need to hear myself.

Words that, as a "community leader" (or whatever you want to call the role Patrick holds), can be hard to come by.

An open letter to Patrick

Dear Patrick,

I'm sorry that you have had to carry so much grief over the past years.

The story of your grandfather, the story of your daughter

— and especially the story of yourself in recent months

— has touched me deeply.

It reminded me that you

— beyond being the funny, intelligent, visionary, inspiring, connecting, leading, creative person that you are, the person we are so privileged to call the leader of our wonderful community

— you are also a human being.

Someone who carries the weight of the world's chaos and uncertainty.

Someone who is, yourself, a victim of the very problem we are all trying to solve together.

In those moments of uncertainty, frustration, and grief, I imagine there are thoughts that move through your mind and tell you things like:

"The work I'm doing isn't good enough."

Or worse: "I have failed."

And perhaps you feel guilt or shame for the fact that there are still moments when the data is missing — or when it takes unacceptably long for reliable, data-driven insights to become available.

I want to say something about that.

Those thoughts, however convincing they may feel, are not true.

It is not solely your responsibility whether the evidence at scale (supporting the pharmacovigilance system) is realised or not.

You depend on others, and on the larger system you are part of.

That can be deeply frustrating.

And yet — there is also something beautiful in that.

It means you don't have to carry this alone.

You have a community to lean on.

And asking for help — as you did so publicly and courageously at the symposium — is not a weakness. It is strength.

The strength of vulnerability, which you have shown so many times. And for that, I want to thank you.

I'd even like to gently invite you — in the coming days, weeks, months, maybe even years — to let yourself lean a little more into the net.

To hang back, just a little.

Yes, we all need to work harder together to make this dream a reality.

But that doesn't mean you, as an individual, need to give even more.

Sometimes less is the important step to try.

So that you free up the time and energy to be with those intense emotions, when they come.

So you can ask yourself: How would I cope better with the situations I'm trying to prevent — even if nothing in the world changed yet? Even if not a single extra data-driven insight existed?

The answers you find might be strategies that get dismissed as "soft" or "vague" or "too sentimental" in our hard-driving, efficiency-focused, ratio-led world.

A longer hug with your daughter.

Allowing yourself to feel the fear that comes with knowing your (grand)father won't be here forever.

Taking rest.

Listening to what your body is asking for — sometimes a little less work, sometimes a little more stillness.

Stepping back from your mission, now and then, for yourself and for the people you love.

And when the thoughts of guilt and shame try to convince you that you haven't done enough, or that you need to go faster and harder — I hope you can meet them with a little more gentleness.

Dear, dear Patrick,

What you do for us as a community is extraordinary.

Your talent, your creativity, your energy — it is what gives us wings.

And at the same time, I wish for you that you can, every now and then, be a little kinder to yourself.

Thank you for the openness and vulnerability you showed at the symposium.

I offer you my shoulders to lean on — alongside the thousands of other members of this community.

Together we will make our dream real.

And in the meantime, we look after each other.

And hopefully,

also after ourselves.

Written with care, by a fellow traveller on this road.