Powerful Patient Data:
Genomics and Family Health History in Health IT

Salt Lake City, Utah | May 30-31, 2013

DAY 1: THURSDAY, MAY 30, 2013

9:00 AM - The Value Proposition
What potential value do family health history and genetic and genomic data in the electronic medical record provide the patient, their family, and society as a whole? This keynote will discuss patient and clinical value, cost benefit, and — with the development of advanced health IT tools — the future impact of genomics-based medicine.

Speaker:
Kevin Hughes, Massachusetts General Hospital [presentation]

9:30 AM - Overview of the Use Case
A model use case was presented as a framework for the meeting, highlighting the workflow from patient to EHR and back to patient. Particular focus was given to existing solutions and standards that need to be implemented and gaps that were further discussed in the panels and breakouts.

Speakers:
James O’Leary, Genetic Alliance [presentation]
Grant Wood, Intermountain Healthcare [presentation]

10:30 AM - Putting the Patient at the Center 
What does it mean for the patient to be put at the center of the health IT ecosystem? Many of the barriers that keep individuals and families from contributing and accessing data in the medical system are only magnified for family health history and genomic information. Issues of data ownership, return of results, and utility to the patient were discussed.

Moderator: Sharon Terry, Genetic Alliance

Speakers:
Ken Chahine, Ancestry.com
Leslie Kelly Hall, Healthwise [presentation]
Sally Okun, PatientsLikeMe [presentation]

11:30 AM - From the Patient to the EHR 
In order for patients to benefit from health IT, their information must be transferred from the physical to the electronic record accurately and efficiently. In addition, there are a myriad of other sources of useful data that can feed into a learning healthcare system. This session discussed data collection mechanisms and tools in multiple settings using different forms of technology.

Moderator: Kevin Hughes, Massachusetts General Hospital

Speakers:
Roger Downey, GlobalMed
Bruce Lin, March of Dimes [presentation]
Lori Orlando, Duke University [presentation]

1:30 PM - Living, Breathing Data [Q&A]
What does it mean to empower data? This session discussed how to connect data and allow it to grow and develop over time. What will it take to allow family health history and genomic data enrichment and integration to occur in most healthcare settings? And what do we do when those rich data sets yield incidental or uncertain findings?

Moderator: Grant Wood, Intermountain Healthcare

Speakers:
Josh Denny, Vanderbilt University
Stan Huff, Intermountain Healthcare [presentation]
Fred Lee, Oracle [presentation]
Elaine Lyon, ARUP Laboratories [presentation]

2:30 PM - Getting to Outcomes
How do we advance the use of data to create benefit for the patient and healthcare provider? This session explored 1) the use of data in clinical decision support and the development of risk algorithms and assessment tools, and 2) how the healthcare provider will use those tools to improve patient care. How do we ensure that solutions reach as many people as possible, including the underserved?

Moderator: Greg Downing, Immediate Office of the Secretary, United States Department of Health and Human Services

Speakers:
Marc Williams, Geisinger Health System [presentation; video recording]
Mark Hoffman, Cerner [presentation; video recording]
Ken Kawamoto, University of Utah School of Medicine [presentation; video recording]
Philip Strong, Palo Alto Medical Foundation [presentation; video recording]

3:30 PM - Breaking the Mold and Building the Future [Video Recording]
While many valuable resources exist within our current healthcare system, overall use of family health history and genomic data is incomplete. How do we use the innovative tools presented today to create a patient-centered, coherent system for the use of family health history, genetic, and genomic data?

Speaker: Gil Alterovitz, Harvard Medical School [presentation]

4:30 PM - Breakout 1
During this first breakout, participants discussed desired outcomes and what steps are needed to meet that reality. This discussion attempted to build a complete list of steps that can be discussed further on the second day.
 

DAY 2: FRIDAY, MAY 31, 2013

8:30 AM - The Real World for Patients
What does this world of health information technology currently look like for patients? What could it look like? We started the day with inspiration from an individual who has her feet in the present, but her mind on the future.

Speaker: Regina Holliday, The Walking Gallery [presentation]

9:15 AM - Breakout 2
This breakout built off of the first and focused on how to make the use case a reality. Participants were expected to plan next steps for technology, standards, and policy development, as well as outline necessary follow-up activities.

11:00 AM - Refining the Use Case/Recommendations
Participants gathered together to report on the progress of the breakout groups and participate in a town hall-style meeting to outline next steps.

Breakout Reports:
Data Collection (James O'Leary, Genetic Alliance) [Video Recording]
Data Connection (Grant Wood, Intermountain Healthcare) [Video Recording]
Data Activation (Marc Williams, Gesinger Health System) [Video Recording]