Acsel Health, an OPEN Health Company
Written by Jasmine Malone, Head of Patient Content on Monday 22nd May 2023
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.
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.”
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.
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