Addressing the elephant and winning the war: Day Two highlights from the 2025 Patient Centricity & Collaboration World Congress
- Olivia Kersey
- Mar 4
- 4 min read
Keynote panel: increasing diversity, equity, and inclusion in clinical trials
After a smashing start on Day One, the second day of this important conference started with a fantastic keynote panel featuring Dr Sondra Butterworth (RareQoL and EDIRA), Naomi Litchfield (Bionical Emas), Claire Bale and Nikul Bakshi (Parkinson’s UK), Amy Yarker (NIHR), and Ify Osunkwo (Novo Nordisk).
One key topic was the importance of addressing historical reasons for mistrust in research:
“As an industry, we absolutely need to do a better job at addressing the elephant in the room. People don’t trust us because we don’t communicate.”
“We’re not dealing with what has gone wrong in trials. We’re not being transparent. We need to say it was wrong, and this is what we’re doing to ensure it doesn’t happen again.”
We [research professionals] have been part of the problem; now it’s time to be part of the solution.”
Sondra then shared a great example of identifying meaningful trial endpoints for African/Caribbean communities:
“Reducing hand tremors is important to the African community – the meaningful quality of life endpoint is being able to plait your daughter’s hair. Who would’ve thought to put that in a research plan? No one – unless you brought in someone from an African/Caribbean background.”
It was also great to hear Ify note the importance of including disabilities (physical and mental) in diversity considerations, as this is an area that is commonly overlooked.
Finally, the importance of embracing change was highlighted by Claire and Sondra:
“There is a culture of fear which holds back change from happening. It feels like such a big challenge – what difference can we make? It turns out that when you commit to trying, you can actually achieve a lot. It’s not going to be perfect, but it’s progress. And that’s better than nothing.”
“Trials are expensive. And people fall off them. And then you repeat the exact same approach with the next trial. What the hell? Why don’t you learn? ”
Wise words on winning the war
We patient engagement professionals know all too well that it can be extremely challenging to convince colleagues and stakeholders of the importance of patient-focused practices. Thankfully, after her panel discussion, Ify then delivered her own presentation with many tips to offer, including:
Focus on winning the war, not the battle.
Make sure you don’t walk alone. Capacitate like-minded colleagues to be champions for the cause and support each other.
Understand ‘AMO’ when you encounter a barrier – is it due to due to lack of ability, motivation, or opportunity?
Ensure you have buy-in from your executive leadership team. Approaches to obtaining this include:
Understand your stakeholders’ motivations for being patient-focused.
Hold colleagues accountable for what is already on the company website.
Monitor, measure, and message what you do internally.
And finally… join ISPEP!
"[We need patient-focused drug development because] if you have a rockstar launch of a new medicine and then patients don’t want to take it, it’s a lose-lose situation.”
Relevant tips were also shared in Liz Clark’s presentation on applying behavioural science principles to overcome inertia in patient engagement:
Allow people to get used to ideas before asking for buy-in.
Expose people to positive data/messages without demanding action.
Start small and gradually.
Include ‘social proof’.
For this professor, it’s personal
Lara Bloom, President and CEO of The Ehlers-Danlos Society, delivered a powerful presentation on the importance of increasing patient engagement in healthcare that followed on perfectly from the patient-integrated medical education session presented by Steve Clark and Medscape the previous day. Weaving in impactful examples of her own experiences navigating the healthcare system with a rare disease, Lara made a strong impression on the room.
“Patient-centred care – human-centred care – isn’t a nice-to-have. This is essential. This is the key to understanding the difference between two people with the exact same cancers but completely different outcomes – one survives, and the other dies. So, we need to embed lived experiences into education for future doctors.”
Lara also noted that to her knowledge, her professorship in patient engagement at Penn State College of Medicine is the only position of its kind in the world. This was received with a well-deserved standing ovation.
Easing the friction and making a business case
While patient engagement professionals are a particularly empathetic group with notable expertise in improving patients’ lives, it is natural that we will have blind spots or not be aware of certain opportunities to make a meaningful difference to a patient’s experience. Wendy Erler (Vice President of Patient Experience at Astra Zeneca, Alexion Rare Disease) provided a great example of this in her presentation:
“You have to understand the true need. For a patient using a wheelchair who is travelling by plane for a trial, provide a wheelchair-equipped van pickup at the airport. Don’t just say you’ll reimburse the taxi. It’s about the ‘double-click.’ Travel is hard enough. Ease the friction.”
Later on, Hayley Chapman from PFMD presented the financial value and ESG necessity of patient engagement. Hayley also noted the recent launch of the Metrics Selector, a great advance in measuring and evaluating patient engagement, building on the vital work of the IMI-PARADIGM consortium who developed a related framework a few years back.
“Patient engagement can accelerate achievement of ESG commitments.”
Summary
Overall, Day Two of this conference was a fantastic combination of meaningful discussions on DEI, insight into gaining that all-important stakeholder buy-in, and compelling cases for the value of patient-focused care and drug development.
What were your memorable moments? Who do you wish you could have heard from? Let us know in the comments!
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