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Rationale for a National Biobanking Research Infrastructure

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Rationale for a National Biobanking Research Infrastructure STRATUM WP7: FINAL REPORT May 2013 Financing UK biobanks: rationale for a National Biobanking Research Infrastructure Work Package 7: Cost Model Final Report Sally Gee*, Luke Georghiou*, Rob Oliver** & Martin Yuille**+ Manchester Business School * & Faculty of Medical and Human Sciences** University of Manchester + contact [email protected] 1 STRATUM WP7: FINAL REPORT May 2013 CONTENTS Executive summary ......................................................................................................................................... 5 Introduction ..................................................................................................................................................... 7 Characterising UK Biobanks ......................................................................................................................... 9 Empirical Case Studies ............................................................................................................................... 17 Summary Case study 1: Abcodia ........................................................................................................... 17 Summary Case Study 2: AstraZeneca ................................................................................................. 18 Summary Case Study 3: Biobanking Solutions .................................................................................. 19 Summary Case Study 4: Fresh Tissue Supply ..................................................................................... 20 Summary Case Study 5: Nottingham Health Sciences Biobank ....................................................... 21 Summary Case Study 6: Small Research Collection .......................................................................... 22 Summary Case Study 7: UK Biobank................................................................................................... 23 Summary Case Study 8: UK Brains Bank Network ............................................................................. 24 Cross-case comparison .............................................................................................................................. 25 Costs ...................................................................................................................................................... 26 Financing & Access Arrangements ........................................................................................................ 31 Implications for a national biobanking RI .................................................................................................. 36 Conclusions ................................................................................................................................................ 38 Appendix 1: Simplified HBS Life Cycle ....................................................................................................... 41 Appendix 2: Semi-Structured Interview Questions ................................................................................... 42 Appendix 3: Case study interviewees ........................................................................................................ 47 Appendix 4: Full Empirical Cases .............................................................................................................. 48 Full Case Study 1: Abcodia ..................................................................................................................... 49 Full Case Study 2: AstraZeneca .............................................................................................................. 54 Full Case Study 3: Biobanking Solutions (Biobanking component of CIGMR) ....................................... 62 Full Case Study 4: Fresh tissue supply ................................................................................................... 72 Full Case Study 5: Nottingham Health Science Biobank (NHSB) ............................................................ 75 Full Case study 6: Small research collection .......................................................................................... 83 Full Case Study 7: UK Biobank ............................................................................................................... 86 Full Case Study 8: UK Brain Banks Network (UKBBN) ............................................................................ 92 Abbreviations ................................................................................................................................................ 99 Bibliography ................................................................................................................................................. 101 2 STRATUM WP7: FINAL REPORT May 2013 Tables: Table 1 The main classification categories for characterising biobanks Table 2 Biobanking revenue models Table 3 Institutional setting for each of the biobank cases Table 4 Key cost drivers, and representative examples, for HBS collection, processing and storage Table 5 Financing and access arrangements for each of the biobank cases Table 6 CIGMR staff employed to work on general biobanking and their funding sources (not including staff, or staff time, employed working on specific projects or in non-biobanking projects). Table 7 Summary of main costs for biobanking at CIGMR. Direct costs relate to project attributable charges, while indirect costs are general overhead costs that are incurred which may be attributed to either CIGMR or the University host. Table 8 Main initial set-up costs for the NHSB Table 9 Estimated current annual operating costs (figures were not available for maintenance, electricity, services, IT maintenance) Table 10 NHSB business model predicted costs (shown as % of total) Table 11 Overview of main income sources associated with the UK Biobank Table 12 Estimates of the main capital expenditure associated with the establishment of UK Biobank Table 13 Overview of initial MRC grant for the UK Brain Bank Coordinating Centre (24 months) Table 14 Interviewee’s interpretation of some of the key benefits offered by a network model for brain biobanking in the UK Diagrams: Figure 1 HBS received, used and disposed of by AZ global biobank Figure 2 AZ Discovery Sciences Biobank staff across both the UK (blue) and Swedish (green) sites. Figure 3 The institutional context of CIGMR Figure 4 Number of aliquots collected (estimated) and distributed by CIGMR. Figure 5 Annual income figures from grants and through cost recovery for CIGMR from 2007-2012 Figure 6 Relative charges associated with different aspects of DNA biobanking (actual figures not shown for commercial reasons) Figure 7 Predicted breakdown of the CIGMR biobanking annual running costs (from MRC funding application) Figure 8 Distribution of HBS types held by the NHSB (2012) Figure 9 Income stream predictions to 2018, from the NHSB business plan 3 STRATUM WP7: FINAL REPORT May 2013 Figure 10 Departmental breakdown of the costs associated with the prospective collection of a fresh frozen tissue HBS (from NHS business plan) Figure 11 Overview of governance and strategic links Acknowledgements: Funding was provided through a public-private partnership supported by the Technology Strategy Board (TSB). The authors would like to acknowledge the contributions of Julie Corfield (Areteva), Margaret Clotworthy (Human Focused Testing), Chris Womack, Rachel Mager and Mark Roberston (AstraZeneca), Balwir Matharoo-Ball and Brian Thomson (NHSB), James Ironside and Chris Tindal (UKBBN), Lesley Stubbins (GSK), Caroline Magee (NCRI), Aino Telaranta-Keerie (Lab21), Louise Jones (CRUK), Catherine Elliot and Joanna Jenkinson (MRC), Ariane Herrick (Salford Royal NHS Foundation Trust), Paul Downey and Pamela Moore (UK BIobank), David Walsh (ARUK Pain Centre), Gisli Jenkins (University of Nottingham, Finbarr Cotter (Royal College of Pathologists), Julie Barnes and Ian Jacobs (Abcodia), Kate Dixon, Bill Ollier, Melanie Lythgo and Craig Sykes (The University of Manchester). The analysis, opinions and any errors are the authors own. 4 STRATUM WP7: FINAL REPORT May 2013 EXECUTIVE SUMMARY The provision of human biological samples (HBS) with associated data is critical for the identification and validation of biomarkers, and the adoption of stratified medicines1. Although crucial for academic and industrial research and development (R&D) the way biobanking is currently financed and organised in the UK no longer meets the needs of the scientific community. Despite several examples of good practice, and of coordinated efforts promoted by funders, these are not representative of the system as a whole. An inadequate supply of high quality HBS, resulting from a lack of coordination and excessive complexity in biobanking, is hampering biomedical R&D, and the potential value of HBS and the associated data is not being realised. The STRATUM project addresses this increasingly serious bottleneck by defining policy for a biobanking network and by providing building blocks and recommendations to facilitate effective operations for collection of HBS, with the aim of making these widely accessible to a diverse range of users. The research reported here contributes to the overall aim of the STRATUM project by focusing on the financial arrangements for biobanking. A qualitative case-study approach was designed to capture the diversity of biobanks in the UK and enable a detailed examination of institutional arrangements, with a particular
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