Building trust and meaningful partnerships

Estimated reading time: 5 minutes

“More than 15 years working across biotech, pharma and patient communities in Europe, the US and Latin America, most recently in patient affairs leadership inside a global biotech. Driven by a strong commitment to make patient engagement more than just a slide in a strategy deck.”

What is front of mind in your industry currently?

Right now, almost every conversation I have—whether with a US biotech expanding into Europe or a patient organisation trying to work out what companies actually want from it—comes back to the same question: how do you build trust across a system that was never designed for the pace either side now needs?

Budgets are tighter. Launch timelines are shorter. Teams are smaller. Regulators and payers are asking for stronger patient-experience evidence than ever before. And yet the infrastructure to gather that evidence responsibly, fairly compensated, properly consented, genuinely two-way, barely exists in most European markets. Everyone agrees patient engagement matters more than ever. Very few have built the muscle to do it well, at the speed the industry may expect.

What are the greatest challenges you face as a CEO, what are your pain points and barriers to overcome?

There is a real disconnection between what patient communities are able to deliver and what biopharma companies expect from them, and it runs both ways.

Most rare disease patient organisations in Europe are run by one or two people, often volunteers, holding an entire disease community’s institutional memory in their own heads. They have rarely negotiated a formal collaboration with industry, never mind understood what a data-sharing agreement means for them, or what fair compensation for their expertise should look like. Many simply say yes to whatever is asked, because no one has ever taught them they are allowed to ask questions back.

On the other side, from a US-based biotech perspective, “Europe” is seen as a single market: one translated brochure, one advisory board format, one timeline. It rarely appreciates that a patient organisation in Germany operates inside a completely different reimbursement and health-system reality than one in Spain, Poland or Romania, and that trust, language and history with local clinicians and payers cannot be replicated through translation alone.

Language is a genuine, underestimated barrier, not just spoken language, but the language of contracts, consent forms and compliance requirements that patient advocates are rarely trained to navigate. And compliance itself, while necessary, often ends up limiting the very information exchange that would make engagement meaningful: companies become so cautious about what they can share that patient organisations are left working with fragments, unable to give informed, useful input. 

Limited experience on both sides compounds every one of these problems.

What are the greatest opportunities yet to be realised or on the horizon?

The biggest opportunity I see is capability-building, on both sides, at the same time.

For patient organisations, that means structured training in what a fair, transparent collaboration with industry actually looks like: what to ask for, what consent and data use really mean, and how to negotiate terms that respect their expertise as much as any clinical or commercial consultant’s. 

A handful of European networks are starting to do this well, and it shows in how confidently their members now engage.

For biotech, the opportunity is building genuine, market-by-market infrastructure before a launch creates urgency: relationships with patient organisations, translated not just linguistically but culturally, sustained over years rather than activated for a single campaign. Digital tools that let patients report structured, validated experience data are also opening a real opportunity, turning lived experience into evidence that can support regulatory, HTA and pricing conversations, rather than leaving it as anecdote.

If we get this right, patient engagement stops being a compliance checkbox or a slide in a launch deck, and becomes what it should always have been: a genuine, mutually accountable partnership that produces better evidence, better decisions and better outcomes for the people who are ultimately affected by them.

If you could create overnight change, what would it be?

If I could change one thing overnight, it would be this: every collaboration between a biotech company and a patient organisation in Europe would start with a clear, written, mutually understood agreement, what is being asked, why, what will be done with it, how the organisation will be compensated, and, critically, how and when they will hear back about what changed as a result.

No more advisory boards convened after a protocol is already locked. No more surveys that disappear into a dossier with no feedback loop. No more assuming that what worked in the US will translate, unchanged, into every European market.

Patient engagement is not endorsement, and it is not a reputational exercise, it is accountability. Closing that loop, every single time, would do more for trust in this sector than any strategy document I have ever read.

What is the next ‘go-to’ event in your diary and why?

The Global Genes Conference, in Boston this September, is the one I have circled. It brings the rare disease community together in one place, patient advocates, biotech leadership, researchers and partners, as equals rather than as sponsors and audience. I am hoping for less talk about “patient centricity” as a message, and more honest exchange on the practical work of building trust and capability between US biotech ambition and the reality of running a patient organisation from a kitchen table on the other side of the Atlantic, the kind of relationship that leads to better evidence, better decisions and better outcomes.

incognito provides a candid look behind corporate closed doors in the RARE disease world.
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