By Dr Stuart Faulkner, Programme and Operations manager, Nuffield Department of Primary Health Sciences, Oxford University, UK
Patient engagement (PE) and patient and public involvement (PPI) before, during and after the research process can help develop research questions, methods and outcomes that respond better to the needs and interests of patients, carers compared to when researchers alone in isolation. Furthermore, researchers can benefit by producing research that is more relevant and impactful.
Many research funders (such as the UK’s National Institute for Health Research; NIHR) increasingly require evidence of PPI/PE in research either during the grant application process, in the proposed studies themselves, or in both. There is a growing PPI “industry” to support this: many academic institutions undertaking health research have designated PPI leads, strategies and plans in place, and much is said (and developed) about the need to ensure “best practice” is followed. In addition, academic-industry partnerships are an increasing mainstay of the successful interface in the translation from “bench to bedside” and embedded in the overarching strategies of academic institutions. Mechanisms to effectively integrate PPI into these partnerships are already being put in place, but more is needed.
Despite all of this, the opportunities for academic groups to collaborate and co-create research with more than one other stakeholder group at a time (i.e. HCP, patients, or industry) are relatively rare, and often restricted to the local or regional levels.
IMI PARADIGM offers unprecedented access to the expertise, experiences and perspectives of all of the major stakeholder groups involved in biomedical development and healthcare. This extends far beyond local levels and covers national, European and international territories. The platform of a public-private partnership opens up not only transparent dialogues between those stakeholders to answer the questions at hand, but can also breakdown long seated barriers, misconceptions and myths of other stakeholder groups .The discourse is no longer split along the lines of “them” and “us”. Problems are solved together as equal partners, working across pillars and helping to avoid silos and blinkered approaches and solutions to problems – often a criticism of some academic communities. Ideas and solutions are challenged at a level not possible with standard research approaches, and the solutions that are co-developed account for those differing options and needs of each stakeholder group much more readily.
Ultimately, the applicability, feasibility and impact of our combined work under PARADIGM is of much greater value to patients, the research community, and the broader stakeholder communities involved. Complementing this is the increased level of public dissemination of our collective outputs – a much more readily digestible and accessible combination of openly available material – on a public platform containing multimedia outputs combined with traditional peer-reviewed scientific articles. The risk that research becomes mothballed, archived and understood by only a select few is thus greatly reduced.
Finally, the PARADIGM consortium sets the basis for growing strong and sustained relations with new partners and new stakeholders, which strengthens future collaborative potential, new research funding potential, and new mechanisms for knowledge brokerage. The partnerships and friendships already created here should last long into the future.
Dr Stuart Faulkner, Programme and Operations manager, Nuffield Department of Primary Health Sciences, Oxford University, UK
Stuart’s 17-year career in translational biomedical science has spanned a PhD in developmental neuroscience, translational models of neonatal brain injury, early phase clinical trials and developing a medical device. A four-year move to Canada saw further research into stem cell treatments for cerebral palsy, coordinating a number of large observational studies in osteoarthritis, and helping to develop new models of healthcare research. Stuart has extensive experience of large multi-stakeholder and public-private partnership programmes of work covering translational biomedical and interdisciplinary research. It includes co-leading a number of work streams and work packages in two recent IMI projects. ADAPTSMART explored and developed new conceptual frameworks to expedite patient access to transformative medicines at the European level. Further substantial work continues in a new IMI project PARADIGM, which aims to enhance sustainable patient engagement across the life cycle of medicine development, which commenced in early 2018.
In addition Stuart has experience of co-leading a variety of consultancy and policy projects across new models of medical innovation, regulation and ethics, under the umbrella of CASMI (Centre for the Advancement of Sustainable Medical Innovation).