GLOBAL CONFERENCE ON ADVANCING SOCIAL PHARMACEUTICAL INNOVATION
MARCH 9 & 10 2023 IN UTRECHT AND ONLINE
During the conference, we will address how to make SPIN initiatives durable. We will share our research findings, listen to participants’ concerns, and facilitate dialogue to learn more about systemic barriers and facilitators of SPIN.
Practically, we will host sessions on the following topics:
SPINs in Research, Development, and Manufacturing
The first topic concerns alternative modes of research, development, and manufacturing that may help remove barriers to the availability of drugs for rare diseases. These SPIN initiatives often involve novel partnerships between the public, private, and not-for-profit sectors. They highlight the need for capacity-building for research, development, and manufacturing close to the patients.
Confirmed panellists include Carla Hollak (head and founder of Medicijn voor de Maatschappij) and John Bell (founder and scientific director of BioCanRX)
SPINs in Coverage and Pricing
The second topic covers alternative modes of coverage and pricing critical to the accessibility and affordability of drugs for rare diseases. These initiatives often raise issues concerning the production and use of real-world data in the regulatory process. They also highlight a series of hurdles derived from discord between different levels of decision-making when it comes to clinical trials and health technology assessment.
Confirmed panellists include Dr. Sandra Sirrs (Canadian researcher, clinician, and advocate) Christophe Duguet (director of Public Affairs, French Muscular Dystrophy Association AFM-Téléthon) and Jasper Claessen (Market Entry, Research and Regulatory Affairs, Dutch Ministry of Health, Welfare and Sports).
The third topic looks at the reproducibility of Social Pharmaceutical Innovation beyond the initiatives we have studied. For Social Pharmaceutical Innovation to last, data platforms, capacity integration at national and international levels, and mutual learning, translation, and adaptation of initiatives across national contexts are essential.
Confirmed panellists include Annette Hay (clinician and hematologist in Canada) and Gaëlle Krikorian (social scientist and activist, formerly of Doctors without Borders), and Saco de Visser (‘quartermaster’ Dutch impulse on Future Affordable Sustainable Therapy).
We will start every session by sharing our most salient research findings on each topic. These presentations are followed by a 45-minute panel discussion with four panellists (one per participating country), centring on issues raised by the research presentations.
Then, we will organise online and offline break-out sessions with all participants to hear concerns and formulate concrete recommendations for policy and practice. We will finish with plenary reporting to ensure we hear and may take along all input.