Presentations from Subject Matter Experts Precision Medicine Task Force July 29, 2015 Leslie Kelly Hall, Co-Chair Jon White, Co-Chair.

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Presentations from Subject Matter Experts Precision Medicine Task Force July 29, 2015 Leslie Kelly Hall, Co-Chair Jon White, Co-Chair

Agenda Call to Order/Roll Call Welcome, Opening Remarks & Workgroup Introduction 23andMe National Institutes of Health Mobile and Personal Technologies in Precision Medicine Workshop Genetic Alliance, Institute of Medicine Recap & Next Steps Public Comment Adjourn 1

Precision Medicine Task Force Membership MemberOrganization Co-Chairs Leslie Kelly HallHealthwise Jon WhiteONC / Agency for Healthcare Research and Quality (AHRQ) Members Mary BartonNational Committee for Quality Assurance (NCQA) Lisa GallagherHealthcare Information and Management Systems Society (HIMSS) David McCallie, Jr.Cerner Corporation Andrey OstrovskyCare at Hand Eric RoseIntelligent Medical Objects Andrew WiesenthalDeloitte Consulting, LLP Federal Ex Officio James BreelingVeterans Health Administration (VHA) Josh DennyNational Institutes of Health (NIH) Betsy HumphreysNational Library of Medicine (NLM) Mitra RoccaFood and Drug Administration (FDA) Linda SanchesHHS Office for Civil Rights (OCR) Christina HeideHHS Office for Civil Rights (OCR) Invited Guests Mina HsiangUnited States Digital Service (USDS) / Office of Management and Budget (OMB) Claudia WilliamsWhite House Office of Science & Technology Policy ONC Staff Maya UppaluruONC – Federal Staff Lead Debbie BucciONC - Technical Advisor 2

Task Force Charge Identify opportunities for innovative collaboration around pilots and testing of standards that support health IT interoperability for precision medicine Recommend existing standards that are currently ready to support PMI Identify emerging standards and reference implementations that may require further pilot testing in order to support PMI Identify gaps in available data standards related to PMI 3

2015 Q32015 Q4 JunJulAugSepOctNovDec FACA Workplan Kick-off Joint HITPC/HITSC Meeting Quality Measure TF - PFS NPRM Standards Advisory (ISA) Task Force P&S Big Data Recommendations Proposed /tentative items ISA Recommendations Milestone Interoperability Task Force Precision Medicine Task Force QMTF - PFS NPRM Feedback Precision Medicine Recommendations Interoperability TF Recommendations 4

MeetingsTask July 17, :00 am - 1:30 pm ET Kick-off Meeting Review charge Identify action steps  Wednesday July 29, :30 - 3:00 pm ET Presentations from experts o 23andme o NIH Precision Medicine Workshop o Genetic Alliance, Institute of Medicine Wednesday August 5, :00 - 1:30 pm ET Presentations from experts o Intermountain Healthcare o Intel Corporation Wednesday August 19, :00 - 1:30 pm ET Presentations from experts Monday August 31, :00 - 1:30 pm ET Develop Preliminary Task Force Recommendations Prep for Sept. HITSC presentation. Thursday September 10, :30 - 3:00 pm ET Finalize l recommendations to HITSC September 22, 2015 – HITSC Meeting Present final recommendations Precision Medicine Task Force Workplan 5

Questions for Presenters Your Organization 1.What role does your organization provide with regard to precision medicine? 2.How do genomics and other “omics” play a part in that work? 3.How important is interoperability to your organization? Standards1.Will data standards help you? 2.What standards, if any, do you currently use? Both HIT and other? a)Taxonomy or vocabulary standards? b)Data? c)Transport? 3.How committed are you to standards use? Roles1.What roles should actors play? a)Government? b)Consumers / Patients? Challenges1.What are the biggest barriers for you with getting you in your areas with respect to data and systems interoperability? 2.What makes it hard or easy to use the following data for population analytics or research: EHR data, genomics data, mHealth data? 3.What other data, gathered from patients, are needed in order to make genomics data as useful as possible in care? 6

23andMe 7

National Institutes of Health Mobile and Personal Technologies in Precision Medicine Workshop 8

NIH Mobile and Personal Technologies in Precision Medicine Precision Medicine Initiative (PMI) Working Group of the Advisory Committee to the NIH Director (ACD) Covered considerations to inform the incorporation of mobile and personal technologies in the national research cohort – Scientific – Methodological – Practical Public workshop held July 27 – 28, 2015 Video cast – 9

Agenda Items - NIH Mobile and Personal Technologies in Precision Medicine Mobile and Related Technologies for PMI – Potential for advancing PMI – Lessons learned from cohort Mobile Technologies for Participant Engagement Variables Mesurable Via Mobile Technologies Social & Technical Challenges for Mobile Technologies in the PMI Cohort Potential Pilot Platforms for PMI Cohort Use Cases 10

Genetic Alliance, Institute of Medicine 11

Recap & Next Steps 12