23 Mar Learnings from ‘Advanced Therapies’ 2023
Last week, OVID Health’s Ruwa Mahdi and Ollie George exhibited at Europe’s largest cell and gene therapy conference – Advanced Therapies’ Congress.
In the face of domestic and international challenges for cell and gene therapies – from VPAS, health system pressures, the large number of low prevalence and incidence indications under development, challenges and delays in manufacturing and trial recruitment, to regulatory uncertainties and reimbursement concerns – there was no shortage of discussion topics for our consultants during the two days.
But we prefer to focus on the growing opportunities presented for patients by this transformational science; Bristol’s new NHS cell and gene therapy centre, which promises to strengthen early phase clinical trial and pre-clinical work; the incredible story of Teddi Shaw, the first child in the UK to receive a revolutionary gene therapy for metachromatic leukodystrophy (MLD); and the renewed prioritisation of Life Sciences through the UK’s “Budget for Growth” and MHRA reforms.
As a purpose driven agency, we were particularly keen to hear more on the Patient Groups and Industry Collaboration Roundtable. Patient organisations, academics, and industry discussed patients and the power of partnerships. As best and worst practices were shared, it was clear that more improvement is still needed in the engagement between patient groups and industry, and in expectation management for both parties.
It is critical that the ‘patient voice’ is not simply a box ticking exercise. Meaningful dialogue and co-creation are key to ensuring the community themselves can shape the outcomes of a partnership and are engaged before the development of an intervention, instead of simply at the time of market launch. This allows for effective outcomes and creates a reciprocal relationship rather than a transactional one.
“Co-creation empowers all and gives us hope.”
This reciprocal relationship sometimes means managing expectations early on, in a realistic yet sensitive manner. With treatments often only benefiting small cohorts or even sub-cohorts of the affected population, it is important to communicate transparently and map out treatment outcomes together. Those at the roundtable spoke of the varying goals of different individuals and patient groups, from recovery to limiting further deterioration, and emphasised that managing the expectations of the community and payers can ensure a sustained, trusting and mutually beneficial relationship.
“Nothing about me without me.”
Overall, the event held a heavily optimistic tone. It was fantastic to see the strong focus on patient voices, and their role as opinion leaders across all aspects of advanced therapies – something OVID Health are passionate about and seek to authentically embed across our work.
If you are a pharmaceutical / biotech company or a patient organisation and want to showcase your partnership working, register to enter our Patient Partnership Index today. And if you’d like to learn more about our work in cell and gene therapies, and how OVID can support you, reach out at [email protected].
By Ruwa Mahdi, Account Executive