June 19th 2018 - 9am-12.30pm - Hyatt Regency Cambridge - 575 Memorial Dr.
Establishing Mechanisms of Engagement with Healthcare Systems to Deliver Precision medicine
Healthcare systems are generating increasing amounts of genetic data enriched with linked phenotypic information as genomics becomes a more established part of clinical care. Amassing genomic data in healthcare silos creates an access barrier to rich information that both researchers and drug developers could mine to understand and treat disease.
Realising the potential insights contained within this data whilst respecting the privacy of patients requires multi-sector collaboration, new understandings and agreements, technical solutions and patient engagement. This meeting will build relationships and models for data sharing. Outlining possible solutions is essential to advancing research, drug discovery and clinical development in the quest towards precision medicine.
Around the table:
- Michael Braxenthaler, Global Head, Strategic Initiatives, Roche
- Carrie Blout, Senior Genetic Counselor and Project Manager, Brigham and Women’s Hospital and Harvard Medical School
- Adem Albayrak, Product Lead, DFCI Inforamtics, Dana-Farber Cancer Institute
- Robert Urban, Global Head, Johnson & Johnson Innovation, Johnson & Johnson
- Vasu Rangadass, CEO, L7 Informatics
- Jennifer Hall, Chief of The Institute for Precision Cardiovascular Medicine, American Heart Foundation
- Shira Rockowitz, Genomics and Bioinformatics Lead Research Computing, Boston Children's Hospital
- Matthew Lebo, Director, Bioinformatics, Brigham and Women's Hospital
- Natasha Frank, Interim Clinical Chief, Genetics, Brigham and Women's Hospital
- Michelle Penny, Senior Director, Head of Computational Biology and Genomics, Biogen
- Vibhor Gupta, Director, Pangaea Group
- Gaurav Kaushik, Associate Director, Data Products & Strategy, Foundation Medicine
- Taunton Paine, Senior Policy Analyst, Clinical and Healthcare Research Policy Division, Office of Science Policy, National Institutes of Health (NIH)
- Michael Hunter, SVP, Strategy, and General Manager, US Operations, PetaGene
- Will Chen, VP Product Management and Business Development, Precision Medicine, Elsevier
- David Thomas, Director of Cachexia Research and Therapeutic Development, The Broad Institute
- Ingrid Holm, Associate Professor of Pediatrics, Harvard Medical School
- David Koepsell, CEO & Partner, Encrypgen
- Piotr Sliz, Chief Research Information Officer, Boston Children's Hospital
- Hilary Lemass, Data Privacy Manager, Genomics Medicine Ireland
Points of discussion:
- What challenges exist – data, technology, privacy – and how will we overcome them?
- What do ideal models for the flow of data look like between healthcare, researchers and pharma?
- Sharing views on current data sharing models and examples successful relationships and best practice.
- The role of patient privacy and engagement to ensure informed consent is central to data access proposals.
- Improving the quality of EHR data and their place on the evidence spectrum vs clinical trials.
- International data sharing through established rules of engagement and standards.
- A review of best practices for stakeholders from hospitals, research labs and pharma for engaging with large scale distributed genomic data sets.
- An overview of how real-world clinico-genomic data sets will impact advancement of medical practice and drug development.
- A solutions wish-list of how institutions and technology providers can prepare for multi-use access to 1,000,000 whole genomes and beyond, and an outline of possible terms of engagement to widen access to data.
- A road map to facilitate a MULTI DIRECTIONAL flow of data and insights between healthcare, researchers and drug developers.