SPIN RESEARCH GROUP
Social Pharmaceutical Innovation is a research team that focuses on different types of social innovations for rare diseases and the implications that these innovations have on the pharmaceutical industry.
Drugs for rare diseases are very expensive and do not have very good evidentiary profiles because clinical trials are small, often unsupported, and are relevant to only a limited number of patients internationally. As a result, a large majority of people living with rare diseases are left untreated. This project seeks to understand the economic, political, regulatory, social, and scientific barriers and facilitators to alternative forms of pharmaceutical research for drugs for rare diseases. Through the evaluation of different kinds of pharmaceutical innovation, specifically social innovation, this research project hopes to understand the social, political, regulatory, and economic barriers and facilitators to emerging forms of innovation for the production of drugs for rare diseases.
PART 1: BACKGROUND RESEARCH
Our first step is to understand the research, development, and deployment contexts for drugs for rare diseases (DRDs) in each participating country. Here each national team will produce descriptions of the social, political/ regulatory, economic, and care contexts that DRDs currently face. If we wish to comprehend how social pharmaceutical innovations succeed and fail, then we first understand the national landscapes for DRDs more generally.
PART 2: STAKEHOLDER INTERVIEWS
Here qualitative research will dig into three different cases of different kinds of social pharmaceutical innovation in each national contexts. We will conduct document analysis, participant observation, and interviews with scientific researchers, regulators, industry representatives, and patient organizations to explore the various barriers and facilitators that social innovation research methodologies face in the development of drugs for rare diseases.
PART 3: COLLECTIVE SHARING
Not only is our research is dedicated to understanding social innovation, but it is also committed to contributing to social innovation processes in pharmaceutical development for drugs for rare diseases. Once case studies have been compared across our countries we will host and facilitate a development and dissemination event with key actors involved in this kind of pharmaceutical innovation. At this event, we will collectively develop policy recommendations in this area.
This project is funded by the Trans-Atlantic Platform (T-AP), a multi-national public funding organization which is composed of nine different government funding bodies. These include but are not limited to the Canadian Social Sciences and Humanities Research Council (SSHRC), Brazil's Fundação de Amparo à Pesquisa do Estado de São Paulo, Netherland's Nederlandse Organisatie voor Wetenschappelijk Onderzoek, and France's Agence Nationale de la recherche. In 2018, T-AP put forth a call for social innovation research. This project is among the 10 that were selected to receive this prestigious funding opportunity. The project team is composed of academic researchers from around the world.
Social innovation is a concept that has been defined differently by various researchers and organizations but can be understood as "the development and implementation of new ideas (products, services and models) to meet social needs and create new social relationships and collaborations" (European Commission, 2013). Additionally, social innovation is geared to serving social needs, serves demands which neither governments or markets can meet, involves the participation of those that are impacted by the innovation, is multidisciplinary, and promotes the sharing of knowledge (Anheier, Krlev, & Mildenberger, 2019; Porter & Kramer, 2011).