“You never know enough to stop listening” – Emma Lawton, Patient Advocate and Keynote Speaker at Patients as Partners 2024.
The energy, insights and transparency at this year’s fantastic European “Patients as Partners” conference was inspiring! Focusing on “integrating patient engagement, diversity and access in medicine development”, we were all blown away by the stories shared from people from all walks of life; a real pleasure to hear directly from those who matter most in our industry.
Each session provided valuable examples of how companies can approach embedding a patient-first mindset. It was clear everyone there was very invested in the idea of Patients as Partners and were there for one reason only…to make actionable change.
So here are the key themes and takeaways to think about:
Patient integration
One big theme was moving away from the concept of being “patient-centric”. Perhaps this term is inadequate now, as the real push is to embed the patient voice throughout the entire medicine development life cycle. To basically become “Fully PATIENT INTEGRATED”.
Collaboration from the very start, with patients, patient advisory groups (PAGs), families and caregivers, ensures the design, the endpoints, the logistics, and in fact every aspect of a clinical trial, are fit for purpose, and that the priorities of each stakeholder are being fulfilled.
Endpoints
“The days of having nice-to-have data are done… we need to ensure we are measuring what truly reflects what matters the most to patients and their loved ones”.
A powerful example was shared by Sarah Zenner-Dolan, Patient Advocate and Keynote Speaker. The Parkinson’s trial she was a part of didn’t meet its endpoints, but she felt if the questionnaires she was asked to fill out were actually relevant to her as an individual living with the condition, it could have been different.
Diversity, equity, and inclusion (DEI)
DEI is not just about age, sex, or ethnicity – people don’t just fit into any one category. It is about intersectionality and acknowledging the differing needs and approaches required. For example, in a case study focusing on LGBTQ+ communities, it was said that it is not necessarily about applying inclusive language, but more about avoiding exclusive language. Don’t overcomplicate things and ultimately, have it reviewed by someone who truly understands.
Co-creation and feedback
Time and time again, the examples showed that a continuous co-creation loop is vital to ensure patient-reported outcomes (PROs) are meaningful, feedback is shared and actioned, and consensus is gained from the very start on what really matters to the patients and their caregivers. Alongside fostering long-term partnerships, a co-creation approach also instigates trust and shows how much their time is valued.
Feedback is a key cornerstone of this partnership; therefore, always check back in with the patients and explain what was done, what wasn’t done and most importantly, why.
Caregivers
This very important support group must not be forgotten. Caregivers are often the people who take on the logistical burdens involved in clinical trials participation. They are also there to provide moral support and often have to look after their loved one’s emotional well-being.
Research has showed that they often feel disempowered during this process. So, ensuring their important views and insights are also considered is vital when co-creating a clinical trial.
Pharma’s recognition of the need for patient-first frameworks
Many pharmaceutical companies are recognising the need for a framework to bridge the gap between patients and scientists, and are actively pursuing this. Utilising those from PFMD, EUPATI, Paradigm, to name a few, they are designing pathways to fit with their individual ways of working and make patient engagement as easy as possible, despite the siloed nature of their industry.
They avidly acknowledge that they still have a way to go to drive and distil the voice of the patient across the full product lifecycle, but perhaps a cross-industry effort will support this and allow for real actionable change.
Last, but no means least, some inspiration from the people that really matter, the patients…
“People won’t always remember what you said, but they will remember how you made them feel” (inspiration taken from Maya Angelou)