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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.


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 
2. Myriad's Family History Tool
3. ZibdyHealth Slides 
4. Health Heritage | 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
Short presentations and Panel discussion

Howard Levy, Johns Hopkins University, (10 min) | Slides
Lori Orlando, Family Health History Tool Meeting Duke University, (10 min) | Slides
Michael Brammer, Progeny Genetics, (10 min)
Grant Wood, Intermountain Healthcare, (10 min)

Panel Facilitator:
Bob Wildin
(35 min discussion)

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
6. CRA Health (Formerly Hughes RiskApps): Risk Clinic
7. MeTree | Slides
8. Family Healthware from Sanitas, Inc.
9. Proband | 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, 
including sharing

Bob Wildin, NHGRI
9:15 a.m. Self-reported vs. EHR Information quality; privacy for individual and for family members | Slides Hirdey Bhathal
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
University of Washington

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. VICKY | Slides
13. CancerIQ | Slides
14. CRA Health (Formerly Hughes RiskApps): Tablet

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
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)
2. EHR integration and implementation - what's stopping us? (Room E1/E2)
3. Clinical Decision Support, including Risk Calculation - Quality control (Room G1/G2)
4. Research Funding Opportunities - PMI and other (Room H)
5. Policy barriers - Bring down that wall! (Room B)

(Facilitators TBA)
3:50 p.m. Group Summary Presentations and Proposals for next steps

Sonya Jooma, NHGRI

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

Last updated: June 15, 2016