Highlights from the Patient Centricity and Engagement Conference

The annual Patient Centricity and Engagement Conference took place in London on the 10 May 2023, bringing together patient engagement professionals across industry, agency, advocacy, and beyond. The sessions highlighted some wonderful developments across patient centricity and engagement, with key takeaways including:

It is now time for action

Over the past four decades, many inroads have been made to create a culture of patient centricity across not only the pharmaceutical sector but the industry as a whole. As noted in the conference opening remarks by session co-chair Emma Sutcliffe from Ipsen, patient centricity has evolved since it was first tentatively adopted during the HIV crisis of the 1980s. In recent months, the FDA has laid out explicit guidance on how to include patient experience data as a key component in the health technology approval process. This is truly wonderful progress for patients. From an industry perspective, however, the feeling is that it is now time to move into action, going from patient centricity to active patient engagement.

Treating the person, not the patient

The OPEN Health session, led by Dr. Sumira Riaz (Psychologist and Patient Engagement Lead) and Steve Clarke (Patient Advocate and Founder of Strive for Five), this year focused on the topic of the so-called Nocebo effect, where the negative connotations and preconceptions associated with a treatment have an adverse impact on potential patients. Beyond the specialty topic, a key insight from this session that resonated for the remainder of the day was to remember the golden rule for any patient engagement activity “Treat the person, not the patient.”

Understanding what PAGs need and how best to collaborate is key

Multiple sessions across the day covered the many perspectives of cross-industry collaboration, yielding valuable, actionable insights. 

From understanding that there is tremendous benefit to be had, as illustrated by Debra from ALK+ UK when describing her fruitful collaboration with Pfizer UK, to clear guidelines and learnings, as presented in the roundtable with representatives from Positively UK, Ovacome, Alkaptonuria Society, and GIST Cancer UK patient advocacy groups (PAGs).

A key directive, and one reiterated in the meeting’s closing remarks, was that successful, early, multidisciplinary representation from pharma, agency, advocacy, and individual patients is not only possible, but essential to attain the goal of true patient centricity and successful patient engagement.

A how-to of true patient centricity and engagement

1.  Ensure patient inclusion is built into your strategy from the very beginning 
2.  Offer advocacy groups and patients a straightforward contracting process, making it as easy as possible to work together 
3.  Do not make individual, isolated requests for insights; create deeper, lasting partnerships instead 
4.  Remember that the PAG has a bigger picture; global-to-local translation is key for most, as they serve ALL patients, not just those in English-speaking countries
5.  Ensure there is value in contributing and a roadmap to applying the collected insights; think about including other relevant internal and external stakeholders, e.g., pricing, reimbursement, regulators, etc., to guide the actual application of patient input to finally getting the medicine 
6.  Bring that data into medical and public affairs discussions – not just preference, but disease burden, patient experience mapping, general feedback 
7.  Build in cross-functional collaboration throughout the pharma specialty and product life cycle 
8.  Remember that the early involvement of all stakeholders and the accurate reporting and publishing of all data are key; insights gained from successful pharma/patient/advocacy collaborations are invaluable and should be shared with the wider medical community for the benefit of everyone

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