Last updated: June 15, 2016
The NHGRI Family Health History Tool Conference, 2016
June 14-15, 2016
8:30 a.m. to 4:30 p.m. Eastern
National Institutes of Health
Natcher Conference Center
Building 45, Room E1/E2
Bethesda, Maryland 20852
NHGRI hosted a Family Health History Tool (FHHT) meeting on June 14 and 15, 2016. It was sponsored by the Genomic Healthcare Branch (GHB), Division of Policy, Communications, and Education (DPCE), National Human Genome Research Institute (NHGRI).
The overarching goal was "To prepare the FHHT field to improve personal health by responding effectively to rapid changes in Family Health History (FHH) data uses, Health Information Technology (HIT) capabilities, and research opportunities." This conference served to identify and share successful approaches to using Family Health History Tools (FHHTs), and to identify unresolved issues and potential solutions that may be addressed by policy, research, and/or collaborative efforts. It also prepared the FHHT field to improve personal health by responding effectively to rapid changes in Family Health History (FHH) data uses, health IT capabilities, and research opportunities.
- Family Health History Tool Meeting Descriptions (Short)
- Family Health History Tool Meeting Descriptions (Long)
- 2016 Family Health History Tool Meeting Summary
Agenda
Tuesday, June 14th
| Time | Topic | Speaker |
|---|---|---|
| 8:30 a.m. | Welcome from NHGRI | Laura L. Rodriguez, NHGRI |
| 8:35 a.m. | Introductions, main goals, and desired outcomes | Slides | Bob Wildin, NHGRI |
| 8:45 a.m. | The Importance of Family History in Public Health and Disease Prevention | Slides |
Muin Khoury, CDC Office of Public Health Genomics |
| 9:00 a.m. | History of HHS Surgeon General's My Family Health Portrait Tool and Standards Development | Slides |
Greg Feero Maine Dartmouth Family Medicine Residency |
| 9:15 a.m. | The Global Alliance for Genomics and Health Family History Tool Inventory and Statement of Best Practice | Slides |
Megan Doerr Sage Bionetworks |
| 9:30 a.m. | Q&A session | |
| 9:50 a.m. | Meeting Logistics | Faye Brown, NHGRI |
Tool Session I (Tools 1-4) |
||
| 10:00 a.m. |
Presentations (4 @ 5 minutes each, no questions) 1. My Family Health Portrait | Slides |
|
| 10:30 a.m. | Break | |
| 10:45 a.m. | Demonstrations (5 concurrent, 30 minutes) | |
Expanding the Frame |
||
| 11:15 a.m. | Introduction to Challenges and Opportunities; research and new uses, including genome and PMI |
Bob Wildin, NHGRI |
| 11:30 a.m. | Lunch Break. We will also take a group photo at this time-look for our instructions. | |
| 1:00 p.m. |
EHR Integration: Successes, challenges, and EHR industry participation | Slides Howard Levy, Johns Hopkins University, (10 min) | Slides |
Panel Facilitator: |
| 2:15 p.m. | Genetic and genomic variant data; FH and variant interpretation interplay | Slides | Brian Shirts University of Washington |
| 3:00 p.m. | Break | |
Tools Session II (Tools 5-9) |
||
| 3:15 p.m. |
Presentations (5 @ 5 minutes each, no questions) 5. Progeny | Slides |
Bob Wildin, NHGRI |
| 3:50 p.m. | Optional dinner logistics and preview of tomorrow's sessions | Faye Brown, NHGRI |
| 3:55 p.m. | Demonstrations (5 concurrent, 35 minutes) | |
| 4:30-5:30 p.m. | Optional additional unstructured time for Demos | |
| 6:30 p.m. | Optional no-host dinner at a local restaurant | |
Wednesday, June 15th
| Time | Topic | Speaker |
|---|---|---|
| 8:30 a.m. | Welcome back and framing of day's activities | Slides | Bob Wildin, NHGRI |
| 8:35 a.m. | Standards: HL7 FH data model and core data elements-status | Slides | Grant Wood Intermountain Healthcare |
| 9:00 a.m. |
Discussion: Data formats, Interoperability, EHR consumability, flexibility for additional uses, |
Facilitator: Bob Wildin, NHGRI |
| 9:15 a.m. | Self-reported vs. EHR Information quality; privacy for individual and for family members | Slides | Hirdey Bhathal ZibdyHealth |
| 9:35 a.m. | Ethical and Legal principles: privacy and sharing | Slides | Howard Levy Johns Hopkins University |
| 9:50 a.m. | Application of the HIPAA Privacy Rule to family health history information | Marissa Gordon-Nguyen Office for Civil Rights, HHS |
| 10:05 a.m. |
Discussion: All |
|
| 10:15 a.m. | Break | |
| 10:30 a.m. | Community voices: Knowledge and shared (mis)understandings of family health histories | Slides | Laura Koehly, NHGRI |
| 10:50 a.m. | Challenges representing complex and modern families and sensitive information | Slides |
Robin Bennett |
| 11:10 a.m. | Reaching underserved patient populations: Adaptations for Usability | Slides | Catharine Wang Boston University |
| 11:30 a.m. | Discussion: All | |
Tools Session III (Tools 11-14) |
||
| 11:45 p.m. |
Presentations (4 @ 5 minutes each, no questions) 11. CancerGeneConnect | Slides |
|
| 12:15 p.m. | Lunch Break | |
| 1:15 p.m. |
Demonstration (4 concurrent, 30 minutes) |
|
Special Capabilities |
||
| 1:45 p.m. | Why it matters? | Slides | David Dubin AliveAndKickn |
| 2:00 p.m. | National Colorectal Cancer Roundtable (NCCRT) Family History Task Group | Tom Weber State University of New York |
| 2:15 p.m. | Disease Risk Calculation; Algorithms, CDS opportunities and cautions | Slides | Kevin Hughes CRA Health (Formerly Hughes RiskApps) |
| 2:40 p.m. | Discussion: Roles of disease risk calculation algorithms; Value to provider, patient; Implementation challenges; diseases with data | Facilitator: Bob Wildin, NHGRI |
| 2:55 p.m. | Break | |
Future Stock and Challenge to Participants |
||
| 3:10 p.m. |
Breakout Groups 1. Data Standards - whence from here? (Room E1/E2) |
(Facilitators TBA) |
| 3:50 p.m. | Group Summary Presentations and Proposals for next steps |
Facilitator: |
| 4:20 p.m. | Wrap-up | Bob Wildin, NHGRI |
| 4:30 p.m. | Adjourn | |
| 4:30 - 5:00 p.m. | Optional additional unstructured time for Demos | |