Project Roadmap 2012-2016


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Project Roadmap 2012-2016

  1. 1. Project Roadmap 2012-2016 CHRIS ARNOLD Board MemberHuman Variome Project International Ltd
  2. 2. Project Roadmap 2012-2016• What is it to us? – An articulation of our vision for the future – A set of goals for the medium-term – A broad-strokes plan for achieving these goals – A tool for keeping us on track• What is it to those outside the Consortium? – Evidence of our commitment – A clear statement • What is the Human Variome Project • Why the Human Variome Project is important
  3. 3. Our Previous Roadmap• The first one produced by the Project• Release April, 2010• Adopted by the Consortium at HVP3• Presented our One Project-Two Channels-Multiple Locations strategy• Set an ambitious action plan – targets achieved
  4. 4. Achievements• We have come a long way! – 740+ Consortium members – 14 Country Nodes and growing – 39 Gene/Disease Specific Databases• Articulation of One Project-Two Channels-Multiple Locations strategy• Standards Development Process• Governance Structure and Processes – Essential to transparent and sustainable future • Company established with board of management • Clear governance policies and protocols • International Scientific Advisory Committee • Advisory Councils
  5. 5. Project Roadmap 2012-2016• Cements the 2010 Vision, Mission, and Values• Builds on the international community of interest which is the Human Variome Project – 740 members, 69 countries represented• Produced by an extensive member consultation process over twelve months• Evolves strategy from 2010-2012 plan• Unifies the consortium under an agreed set of goals
  6. 6. Built on 4 Overlapping Pillars Setting Behaving Sharing Building Normative Ethically Knowledge Capacity FunctionPicture Credits: Michael Mandiberg via Flickr, Henrik Moltke
  7. 7. Setting Normative Function1. Continue the expansion of infrastructure and associated organisational structures defined by the Global Collection Architecture proposed in the One Project-Two Channels-Multiple Locations Strategy2. Increase development of HVP Standards and Guidelines especially in areas of priority as determined by the Human Variome Project Consortium3. Regularly publish the Human Variome Project Solution Blueprint and encourage compliance amongst existing data infrastructure
  8. 8. Setting Normative Function4. Develop a process for monitoring compliance with the Human Variome Project Solution Blueprint and providing accreditation to new and existing infrastructure5. Encourage the development and use of open-source tools and systems that enable infrastructure to be developed and operated in compliance with the Human Variome Project Solution Blueprint
  9. 9. Behaving Ethically1. Develop a more systematic approach to ethical, legal, social and cultural issues related to the practice of genetic and genomic medicine2. Coordinate the development of suitable tools and guides to assist members in their work3. Improve knowledge levels through learning activities related to ethical, legal and social issues
  10. 10. Sharing Knowledge1. Increase membership and the breadth of skills within the Consortium2. Encourage knowledge sharing between Consortium members through the development of knowledge exchange ventures, professional development and training courses
  11. 11. Sharing Knowledge3. Participate in Public education initiatives through the engagement of Consortium members at the national and regional level4. Work with the burgeoning rare disease movement to enhance cooperation around complementary endeavours
  12. 12. Building Capacity1. Draw on the efforts of national and regional societies to develop a strategic approach to education and training issues in genetic and genomic medicine that is coordinated globally2. Devise ways to bridge the gap in skills and expertise between the developed and the developing worlds3. Ensure that young people are attracted to the field on an on- going basis to build the global future of genomics and genetics
  13. 13. Targets• a spectrum of HVP Standards and Guidelines communicated via the Solution Blueprint• a process of accreditation HVP Country Nodes and gene/disease specific databases• databases for at least 3,000 genes• 40 HVP Country Nodes• an ethical framework• an education and training strategy• and training programmes and knowledge sharing initiatives
  14. 14. Challenges• Road Map targets are ambitious• A few challenges to reflect upon: – New Sequencing Technologies – Clinical utility of Databases – Creating new Gene/disease specific databases – Sustainability
  15. 15. Sustainability• Funding is required for: – HVP Country Nodes – Gene/Disease specific databases – International Coordinating Office• Must create a conducive environment• Develop and implement a plan to secure funds
  16. 16. Structure of this Meeting• Structured around the Roadmap and the Human Variome Project’s 4 pillars• Roadmap provides structure• Main Meeting is the opportunity to discuss and debate• Delegates provide recommendations to Councils and International Scientific Advisory Committee
  17. 17. Paris Meeting Outcomes• Agreed actions promulgated at meetings on Friday of the 2 Advisory Councils and Scientific Advisory Committee• Support from HVPI Coordination office to progress agreed actions• 2014 Meeting – opportunity to review progress- – What is working well / to be extended – What requires some change/eliminate – What needs to commence• The Roadmap and the action plans derived from it are Living Documents
  18. 18. Your invitation - and challenge asconsortium members• Engage - with each other• Consider - the Roadmap and how the project can evolve in a sustainable manner• Develop plans - put flesh around the Roadmap with well considered actions which can reasonably be implemented
  19. 19. Feedback• HVP5 – halfway point in 2014 – Pause, reflect, regroup• We welcome feedback from you at any time – This is part of an on-going process of achieving our goal