This workshop was the final step of a series of structured brainstorming exercises to identify potential sustainability scenarios for patient engagement addressing the outcomes and concepts of PARADIGM and that will be adopted by all stakeholders involved in medicines R&D.
In addition to the consortium partners working on sustainability in the project, Paradigm International Liaison Group (PILG) representatives and patient advisors participated in this workshop.
The group sought to agree on concrete actions to fulfil the most feasible and viable features from the list of identified strengths of previously designed scenarios and to agree on mitigation plans to overcome identified weaknesses. The final objective was to identify and refine which elements could be included in the scenario(s) of sustainable patient engagement.
The participants discussed priority items and the actions that need to be taken and possible challenges to be faced in the implementation of the sustainability model.
The concept of patient engagement ‘market place’ was discussed, in which existing initiatives play different roles (e.g. training, methodology and processes), but in which the rules are not harmonized (e.g. code of conduct, management of competing interests, fair market value). The creation of a centre of excellence (e.g. ICH-like concept) was discussed whereby all representatives from different stakeholders are equal partners, working towards a common purpose (co-creation), developing and defining standards for patient engagement.
Education and training were also considered necessary with numerous issues to consider: virtuous circle of revenues reinvested into training and education/increasing the quality of patient engagement, co-payment options, avoiding English-centricity, improved engagement at national level and dissemination to the broader public.
The discussed proposals will be further consulted and refined to be taken up in the development of the roadmap that aims to ensure the sustainability of PARADIGM outcomes.
Strategic and meaningful interaction with POs also requires an environment in which POs can operate in a sustainable way and have diverse funding sources. The potential solutions proposed included a mix of seed funding, fee-for-service, and subscription fee with variations; the potential impact of investors and venture capitalists on the mission; remuneration of experts; and the impact on conflicts of interest and remuneration of experts. The group concluded that the financial models for any funding should be first linked to the services provided.