Re-engineering Collaborative Mechanisms and Knowledge Networks to Accelerate Innovation for Alzheimer s

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Re-engineering Collaborative Mechanisms and Knowledge Networks to Accelerate Innovation for Alzheimer s Richard A. Johnson Chairman, OECD/BIAC Science & Technology Committee National Academy of Sciences Board on Life Sciences CEO, Global Helix LLC Unlocking Global Collaboration to Accelerate Innovation for Alzheimer s Oxford, 20-21 June 2013 johnsri@alum.mit.edu

Drivers of Key Inflection Points for AD Research, Accelerated Innovation, & Care Models Require Policy Shifts Re-engineering Clinical Research Ecosystem Convergence and the New Biology Next-generation Enabling Tools Revolution and Platforms Aligning Science and Biomedicine with Challenge-driven Innovation and the Knowledge Triangle : Problem-driven, Tool-based, and Solutions-oriented Big Data and Knowledge Networks and Markets Patient-centered Approaches from the Outset Global Solutions & Local Knowledge

Re-Engineering the Clinical Research Ecosystem (10 years on) (Grady 2004)

Convergence of the New Biology with Physical Sciences & Engineering + Redrawing the Boundaries for Accelerating Research and Translation = Foundational Shift for AD and Biomedicine over next 20 years The New Biology (NAS, 2009/2011) The Third Revolution in Life Sciences (MIT 2011)

New Enabling Tools and Platforms Required to Traverse the Scales (and Complexity) of the Brain not to mention Innovative Care Models (Donoghue, Brown Institute for Brain Science, 2013)

Aligning AD Research and National AD Strategies with National Innovation Strategies and new Business Models: New AD Initiatives Build on Open Innovation, Multi-directional S&T, University-Industry Partnering, Precompetitive Consortia, Forward-looking IPR, and New Public-Private Collaborative Mechanisms to Enable Cutting-edge Research, Innovation, and Care Models

Challenge-driven Innovation: AD Research as a Foundation for The Creative Destruction of Medicine [in a good way] and Innovative Care Models Eric Topol (2012) Patient-driven needs require innovative research beyond traditional research paradigms Expand the Research Agenda Social Science research matters Risk Reduction strategies Understanding support communities Behavioral and lifestyle research Non-technological innovation matters: Risk reduction strategies, Best practices for Innovative Care, Innovation Models of support services

Big Data Changes (Almost) Everything -- The Fourth Paradigm (Gray 2009), the Internet of Things/M2M, Big Data Analytics, and Patient-centered Data Come Together in New AD Research, Collaborative Mechanisms, Patient Choice Options, and Healthcare Initiatives

Big Data: New Sets of Access, Diffusion, Ownership, and Re-Use Policy Issues Range of Inter-related Issues Data Silos Governance Curation, management, and quality Privacy and confidentiality Data linkages Lack of standards, interoperability, data exchanges, common nomenclature Patient consent and research re-use The emerge Network = DNA biorepositories + Electronic Medical Records + GWAS studies + Results in Clinical Care Settings Data, samples, and material transfers 9

Rapid Growth of Knowledge Networks and Markets OECD Knowledge Networks and Markets (2012)

Patient-centered from the Outset: Re-coupling Research and Technology with Patients, Families, and Support Communities Banner Alzheimer s Institute/NIA Experiment Reintegrating Technology Innovation, Social Needs, and Patients (Maynard 2013)

AD is a Global Crisis: Addressing the Growing Burden in Low- and Middle-Income Countries 10/66 Dementia Research Group: more than 2/3 of dementia patients but < 10% of the populationbased funding

But New Global Opportunities to Leverage Global Solutions & Local Knowledge/Contexts G8 Dementia Summit AD Innovation, Financial Infrastructure, Portfolio Theory, and Global Securitization (Andrew Lo, MIT - 2013)

Research Collaborations Broaden and Deepen

Global Business Becomes a Major Player and Partner

Comprehensive Regional Initiatives e.g., Europe

Patient-driven Strategies and Venture Philanthropy

1. Maximize OECD s Role as the Gold standard Think Tank and Economic Bridge to Economics/Finance/Budget Ministries The Reality of Alzheimer s: Fiscal Nightmare and Barrier to Sustainable Economic Growth: If Dementia Were a Country, It Would be the World s 18 th Largest Economy Developing the Economic Case for Investing in AD and the Need for a Global Financing Mechanism Cumulative Costs of AD ~ 460 billion; >1% of global GDP (and rising)

2. Create an OECD Global Policy Forum on National/Regional/Subnational Plans leverage the OECD s convening power on a global scale by creating a global policy hub 13 National Plans + Complement Core Building Blocks such as JPND (Europe/Canada) and NAPA (U.S.) Best Practices, Infrastructure, Governance and Accountability Whole-of-government Policies (beyond Research only) Financing Mechanisms Multi-stakeholder Strategies Comprehensive Collaborations

Develop a Global Network of Networks to Enable Comprehensive Collaboration and Policy Coherence Leverage extensive OECD expertise on new Innovation Modes, Knowledge Networks, Business Models, and Virtual Organizations Scaling for optimal impact Compression of time scales/cycle times ( Silicon Valley time rather than academic/government ministry time cycles) Optimization Prioritization Impact assessments and metrics Combined with OECD-facilitated Global Databases International Database of Shared Research Infrastructures for AD Network of Global AD Database Linkages Database of International R&D Collaborations in AD

3. Focus on Innovating Regulatory Governance and Regulatory Science: an OECD Berlin 2.0 Process

4. Develop Financing Toolkits and Mechanisms to Leverage Public-Private Funding, to Attract Risk Capital, and to De-Risk Research & Innovative Care Models 23

5. AD and Big Data Technical Roadmap: Standards, Validation, Measurement, Interoperability, Data Transfer Protocols Why a Standards-driven Roadmap? Proven Approach in other Complex, Cumulative, Integrated Domains Biomarkers as a Case Study building on OECD 2010-2012 work programs and analysis Standardized Information Commons Global-scale patient registries Facilitating trans-border data flows and database linkage technical policy issues Best practices for pre-competitive data sharing, access & diffusion

6. Strategic Design, Business Models, Globalization, and Measurement of PPPs and Collaborative Mechanisms Program design and metrics Governance structures Interoperability and collaboration Financing Modes Strategic Policy Mix for PPPs Globalization of PPPs

Compelling OECD Value Proposition: Delivering Global Best Practices and Innovative, Whole-of-Government Policies in Support of AD Research, Innovative Care Models, and Public Awareness

apply. Thank You! Knowing is not enough; we must do. Willing is not enough; we must Goethe Contact Email: johnsri@alum.mit.edu