Building and sustaining collaborative platforms in genomics and biobanks for health innovation

Abstract

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Democratizing clinical-genomic data: How federated platforms can promote benefits sharing in genomics

“…To improve disease diagnostic capabilities for the greatest number of people, larger and more diverse cohorts are needed ( Zoch et al, 2021 ). By facilitating international cooperation via secure data unification, federation can support more diverse population representation in genomic datasets ( Vesteghem et al, 2020 ; Asiimwe et al, 2021 ; Garden, 2021 ; Powell, 2021 ; Zoch et al, 2021 ; Lee et al, 2022 ). In academic research, initiatives like Matchmaker Exchange (MME) are demonstrating how distributed datasets of genotypes and rare phenotypes can be combined using a federated network to facilitate rapid, secure data sharing to achieve faster diagnoses ( Philippakis et al, 2015 ; Zoch et al, 2021 ).…”

“…As the private sectors will not freely disseminate their knowledge, there is a model by which genomic initiatives and biobanks can negotiate data access agreements with pharmaceutical companies who require large and diverse patient cohorts for R&D and drug discovery pipelines ( Garden, 2021 ; Thorogood et al, 2021 ). An example is that of 54 Gene, a venture capital-backed biobank based in Nigeria, which will partner with pharmaceutical companies to fund its research by charging access fees, like the UK Biobank ( Maxmen, 2020 ).…”

“…As observed within research, increased sample size improves the potential for discovery: genome wide association studies (GWAS) are prime examples, where it has been shown that a 10-fold increase in sample size can lead to a 100-fold increase in identified loci with significant disease associations (Visscher et al, 2017). Due to their sensitive OPEN ACCESS nature, clinical, phenotypic and omics datasets are primarily distributed and stored in siloed, inaccessible locations (Asiimwe et al, 2021;Garden, 2021); in a stark example, the World Economic Forum estimates that 97% of all hospital data goes untouched 1 .…”

Collaborative mechanisms for sustainable health innovation

“…A shift in perspective from business models as instruments of sheer value creation to business models as devices that facilitate stakeholder relationships and corresponding value exchanges has been proposed by Freudenreich et al (2020[105]). (Angeli and Jaiswal, 2016 [106]; Yunus, Moingeon and Lehmann-Ortega, 2010[107]; Yu, 2020[108]). Extensions of this framework are proposed by an increasing number of authors; however, the approach of 'valuing value', also in non-financial terms, remains a fundamental challenge for those actors experimenting with social, sustainability-oriented or hybrid collaborative platforms and organisations (Oskam, Bossink and de Man, 2020 [109]).…”

“… Stewardship reduces product misuse and overuse and promotes responsible use. More collaborative business models have been described across a variety of industries and are conceptualised to include in the profit equation not only financial returns but also welfare-enhancing outcomes (Angeli and Jaiswal, 2016 [106]; Towse et al, 2017[111]). Examples are:…”