The Avicenna Public & Patient Involvement (PPI) task force presents their first position paper with focus on assessing the status quo and proposing an action plan for establishing PPI within in silico medicine.
“Nothing about us without us” is a patient centric approach to medicine that has remained largely overlooked within the biomedical research and innovation domain. Activities are traditionally shaped by the scientists themselves across the entire project lifecycle, from focus prioritisation based on previous scientific literature to emphasising outputs (e.g., publications and devices) over impact (e.g., improving quality of life).
Public and Patient Involvement (PPI) unlocks the potential for research activities to ensure patient relevance and benefit, foster technology adoption, lower risk of attrition and associated costs, and ultimately accelerate research translation into positive societal impact through collaborative co-creation.
The Avicenna Alliance (AA) policy development group PPI task force (TF) identified that PPI has gained considerable momentum in the wider biomedical community, with dedicated national and international efforts currently ongoing within AA member geographies including the UK, EU, and USA. However, there has been no coordinated international PPI initiative with focus on in silico medicine prior to the AA PPI TF establishment. Based on a recently conducted survey, there is currently low PPI awareness, mixed perceptions, and little internal support within AA member organisations (including both academia and industry), in contrast with a general consensus for PPI to be a worthwhile pursuit. With the wider biomedical community already embracing PPI, including internal and external incentives such as access to funding, the in silico community is therefore at risk of finding itself left behind in a rapidly evolving environment that valorises on PPI-enabled comparative advantage. The PPI TF therefore strives to address the above-identified challenges by providing a coordinated international PPI initiative with a focus on in silico medicine. Based on these analyses, the AA proposes a 3-stage approach to promote PPI implementation within the digital health community based on
1. creating awareness,
2. supporting implementation,
3. enabling the requisite culture change to accelerate research translation into positive societal impact.
To address these challenges, the AA PPI task force proposes a coordinated international initiative for PPI focusing on in silico medicine. Its three-stage approach focuses on creating awareness, supporting implementation, and enabling a culture change to accelerate research impact. Collaborating with leading PPI networks, the aim is to generate a "snowball effect" first within the AA, then extend the efforts to the wider in silico medicine community, to further transcend the biomedical health community for maximising societal impact together with patients and the public.
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