1. Draft Preliminary Recommendations Precision Medicine Task Force September 10, 2015 Leslie Kelly Hall, Co-Chair Jon White, Co-Chair

2. Agenda Opening Remarks, Work Plan Review Discussion of Preliminary Standards Findings Next Steps 1

3. 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) Christina HeideHHS Office for Civil Rights (OCR) Betsy HumphreysNational Library of Medicine (NLM) Mitra RoccaFood and Drug Administration (FDA) 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

4. Precision Medicine Initiative Mission Statement To enable a new era of medicine through research, technology, and policies that empower patients, researchers, and providers to work together toward development of individualized treatments. 3

5. 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 4

6. Precision Medicine Task Force Workplan MeetingsTask July 17, 2015 11:00 am - 1:30 pm ET Kick-off Review charge, work plan Overview of the Precision Medicine Initiative - White House Office of Science & Technology Policy & National Institutes of Health Wednesday Jul 29, 2015 1:30 - 3:00 pm ET Presentations from experts - 23andMe; NIH Precision Medicine Workshop; Institute of Medicine Genomics Roundtable Wednesday Aug 5, 2015 12:00 - 1:30 pm ET Presentations from experts - Intel Corporation; Intermountain Healthcare; National Library of Medicine Wednesday Aug 19, 2015 12:00 - 1:30 pm ET Presentations from experts o Duke Me Tree Project o eMerge Network o New York Genome Center o Sage Bionetworks Monday Aug 31, 2015 12:00 - 1:30 pm ET Develop Preliminary Task Force Recommendations Thursday Sept 10, 2015 1:30 - 3:00 pm ET Revise Task Force Recommendations Friday Sept 18, 2015 Time TBA Finalize Recommendations to HITSC September 22, 2015 – HITSC Meeting Present final recommendations Precision Medicine Task Force Workplan 5 New Meeting

7. Focus and Questions for Presenters 6 Focus The exchange of genomic and phenomic data among: – Patients/Participants – EHRs – Researchers – Testing labs (for both research and clinical care) Questions for Presenters What is the key problem or set of problems your organization is attempting to solve? What is the minimum interoperable data set of genome and phenome data for these data exchanges? Are there standards that can support this movement today? What gaps are there and what is needed in the future?

8. Standards Table Attachment Three Categories Readily Applicable Standards - previously discussed by HITSC and PMTF with immediate potential to help PMI Promising Standards - those with potential that are not yet fully tested Gaps in Standards – deficiencies among current standards Accelerators – resources or standards in development that could accelerate progress towards interoperability in PMI 7

9. Questions to Advance Findings and Recommendations De facto Standards – Are there overarching de facto standards today that we have a bias towards using to support PMI, even if they are not fully mature? Mature Standards – Are there standards that would pass maturity test for HIT in general, but hasn’t been used widely for the PMI use case? What have we not included here? – Anything misplaced or missing? Accelerators – What could we recommend to fill the identified standards gaps? – Are there standards in development that could be fully tested in time to meet the requirements of PMI/the PMI cohort? – What is ONC’s role in promoting acceleration? 8

10. Next Steps 9 NEXT STEPS