5 key takeaways from the Patient Centricity and Engagement Conference

Patient engagement continues to evolve at pace, and this year's conference made one thing clear: the gap between intention and action is where the real work lies. For those of us connecting with diverse patient communities, the most valuable insights came from people sharing what actually moves the needle. Here are 5 practical takeaways drawn directly from the conversations on the day, with credit to the speakers and organisations who shared them.

1. Building trust through partnership

Patients and patient organisations should be involved as genuine partners, not consulted only when input is needed.

Debra Montague, President of Lung Cancer Europe, kicked things off by reminding conference attendees of the importance of keeping patients informed. Gathering input isn't enough on its own. When you share the reasoning behind your choices, you show patients that their lived experience has shaped something real.

In a similar vein, Jose Diaz, Global HEOR – Health Systems Economics & Value of Innovation Lead at BMS, made the case that patients should be treated as partners in shaping the work. The right time to involve them is when you're designing the research questions, not after. Seeing patients as knowledge holders, not temporary guests, will enable stronger collaboration from the very start.

The morning host captured it perfectly: change moves at the speed of trust. You can't rush meaningful collaboration. Trust grows through consistency and honest dialogue, and it's the foundation on which everything else depends. Build the relationship first, and progress follows.

2. Own historical trauma and design for everyone

A powerful session on patient trust challenged us to address historical trauma head-on rather than skirt around it. Swati Bhagat-Jones reminded us that broad labels like "South Asian" or "Black" communities flatten vast, diverse groups. She also made a striking point: adherence and compliance are privileges. We can't only involve those with the time and financial means to contribute, so we must design for genuine inclusion.

3. Treat people as people, and think about quality of life

A panel on patient perspectives reframed how we think about support and outcomes. One point landed hard: living another 20 years in misery isn't something a patient would choose, so quality of life has to sit at the centre of our thinking. Patients rarely live with just one condition, so look at them holistically. Above all, treat people as people, with respect, not as someone moving through a process. The discussion served as a reminder that assumptions can easily miss what matters most; the only way to truly understand patient priorities is to involve patients themselves.

4. Point patients toward trusted health information

Tom Bishop and Louise Jones from the charity Anthony Nolan highlighted the challenge patients face when navigating health information online. With so much content available, knowing which sources can be trusted is increasingly difficult.

They presented on the value of verified health information, specifically the ‘PIF Tick’, and the importance of spreading the word about it so patients know what to look for when searching for trusted information. As a PIF Tick-accredited agency, we know first-hand the overwhelming number of sources patients are faced with online, and by partnering with an organisation like PIF, we can ensure that all information we provide to patients is both credible and accessible.

5. Transform from the inside out

Ravindra Deore, Senior Medical Director, Global Medical Affairs, Mundipharma, described patient engagement as a cultural shift, not a single project. That means building the policies, processes, and toolkits that make engagement possible across the organisation.

This was a theme echoed in various other sessions – patient engagement is not the sole responsibility of those with it in their job title. Anyone in an organisation can take action and make a difference. Sally Dews, Pfizer, talked about how governance is what makes engagement stick. Without it, you risk it slipping off the agenda and people forgetting the ‘why’. Clear guidance and a consistent internal campaign to continually drive motivation are where we’ll see a shift.

When the internal foundations are solid, meaningful external engagement becomes far easier to sustain.

Bringing it together

The principles of patient centricity are well established. What this conference reinforced is that progress depends on how we apply them.

• Involve patients early and close the loop so their experience genuinely shapes decisions.
• Choose lasting partnerships over one-off asks and let technology support real human connections.
• Design for everyone, owning historical trauma and avoiding one-size-fits-all approaches.
• Build trust and internal conviction, because culture sustains engagement when projects fade.

A standout reflection from a Novo Nordisk session summed up the spirit of the day: how can we know we're doing the right things if we're not involving the patient? Catherine Brant, Patient & Professional Partnerships Lead, Novo Nordisk, shared a humbling story from her nursing years. She spoke of the importance of treating every patient as an individual and taking the time to understand their needs and barriers to care so you can ensure they receive the right support at the right time.

So don't assume. Ask, listen, and act. The relationships you build today will shape the outcomes you achieve tomorrow.

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