Thursday, February, 19, 2009
6:30 to 8:30 PM – Welcome Reception and Buffet Dinner – North Terrace
Friday, February 20, 2009
7:00 to 8:00 AM – Continental Breakfast – King Charles
8:00 to 12:00 PM – Day One Scientific Session – King Charles
8:00 to 9:00 AM – Introductory Addresses
Joyce Mitchell – Welcome
Stan Huff – Goal for the retreat
• Create a prioritized list of actions that can be taken by ACMI, AMIA and the individual members of the organizations to hasten the realization of benefits of PH.
Marc Williams – PH from the clinician perspective Slides
• What is the scope and definition of "Personalized Healthcare"?
• Activities of the Clinical Genetics Institute
• Personal and family history
• Biomedical informatics needs and challenges
Patti Brennan – PH from the consumer perspective Slides
• What is the scope and definition of "Personalized Healthcare"?
Mark Boguski – 23&Me Slides
• Molecular genetic aspects of personalized health, pharmacogenetics
9:00 to 10:00 AM – Group Discussion
Joyce Mitchell – Facilitator
Stan Huff – Scribe (session leaders will take notes)
• Reflections on the introductory presentations
• What is Personalized Healthcare?
• Instructions on breakout sessions
From NPR's All Things Considered "Family Struggles With Ambiguity Of Genetic Testing"
http://www.npr.org/templates/story/story.php?storyId=98818197
Patti Brennan recommends hearing about this approach by Coriell to give anyone (or at least the first 10000 responders) a free genome screen and as report of any "medically actionable" findings.
http://www.kk.org/quantifiedself/2009/02/free-genetic-testing.php
10:00 to 10:15 AM – Break
10:15 to 11:00 PM – Breakout Sessions
Breakout Session 1 – Genomics and Pharmacogenomics Issues
Chuck Jaffe – Leader
Scott Evans – Scribe
• What is the future of gene therapy?
• How will genotyping contribute to PH? (Disease/cancer risk; Disease diagnosis; Disease prevention)
• How will family history contribute to PH?
• How do pharmacogenomics contribute to PH?
• Treating disease based on the phase of the disease that the patient is in: specific subtypes of Multiple Sclerosis, Rheumatoid Arthritis, etc.
• Are there new ethical questions that need to be considered?
Breakout Session 2 – Consumer Opportunities and Issues
Patti Brennan – Leader
Justin Starren – Scribe
• Accompanying persons, friends, and significant others are especially invited to this session!
• Personalized fitness regimens
• Personalized nutrition regimens
• Risk from personal behaviors and habits
• Remembering preferences and intolerances
• Availability and enrollment in clinical trials
• Personalized visits and encounters: convenience based on patient's work and family situation
• Personalized health counseling
• 23&Me
• Wellness testing procedures and timing, risk management (i.e. Mammography; Colonoscopy; Prostate Specific Antigen testing)
Breakout Session 3 – Contributions of Personal Health Records to Personalized Healthcare
Klaus Kuhn – Leader
Stan Huff – Scribe
• HL7 Pedigree application
• How can PHRs contribute to PH?
• What role do online resources play in Personalized Healthcare?
• Can PHRs be used to link family history, personal history, and medical history?
• Are standards adequate for sharing pedigree and family history information?
• Can PHR data be mined to enhance Personalized Healthcare decisions?
11:00 to 12:00 PM – Harvesting of Ideas from Breakout Sessions
Joyce Mitchell – Facilitator
Stan Huff – Scribe
12:00 to 5:00 PM – Free Time/Collegial Activities
4:00 to 5:00 PM – ONC & The Stimulus Bill – King Charles
Rob Kolodner – Optional Federal Briefing
5:00 to 7:00 PM – Hospitality Time – South Terrace
Saturday, February 21, 2009
7:00 to 8:00 AM – Continental Breakfast – King Charles
8:00 to 12:00 PM – Day Two Scientific Session – King Charles
8:00 to 9:00 AM – Opening Introductory Addresses
Stan Huff – Overview of Day 2
John Glaser – PH and AHIC
• What is the scope and definition of "Personalized Healthcare"?
• Summary of AHIC work and report/recommendations
• What has been the reaction to the panel's recommendations?
• What has happened as a result of the report?
• Where did the idea come from for AHIC to have this subcommittee?
Harry Reynolds – PH from the Payer Perspective
• What is the scope and definition of "Personalized Healthcare"?
• What plans and policies are payers considering relative to PH?
• Will PH change the way we practice medicine in the US?
Rob Kolodner – PH from the Government Perspective
• What is the scope and definition of "Personalized Healthcare"?
• What PH related activities is ONC undertaking?
• What plans and policies are being considered relative to PH?
9:00 to 10:00 AM – Group Discussion
Stan Huff – Facilitator
Scott Evans – Scribe
• Reflections on the introductory presentations
• What is Personalized Healthcare?
10:00 to 10:15 AM – Break
10:15 to 11:00 AM – Breakout Sessions
Breakout Session 1 - The Role of Government in Personalized Healthcare 22109Breakout1Notes
Don Detmer – Leader
Michael Lincoln – Scribe
• Should PH be a part of healthcare reform in the new administration?
• Where are the specific areas where Biomedical Informatics can help?
• Will PH change the US healthcare system? Will it affect reimbursement policies?
• Should there be laws to regulate the secondary uses of identifiable medical data?
• Are new laws needed to protect privacy and confidentiality?
Breakout Session 2 - Insurers and Personalized Healthcare
Cindy Gadd – Leader
TBD – Scribe
• What is the business case for PH?
• Will there be new costs? How will we cover the costs?
• Will Personalized Healthcare bankrupt the healthcare system?
• Who implements and builds Personalized Healthcare systems?
• Are laws needed to regulate payer activities related to Personalized Healthcare?
standards022109Breakout Session 3 - Standards to support Personalized Healthcare
Jim Cimino – Leader
Ken Goodman – Scribe
• Are new standards needed? Data models, terminology, messages, decision support, service APIs
• Do we have standards for sharing genetic knowledge, i.e. gene frequency, disease associations, gene sequences
• What role do protocols and guidelines play in PH? What is needed to enable sharing of Personalized Healthcare decision logic?
• What should the role of the government be in standards development?
• Are there basic research questions related to Personalized Healthcare that need to be resolved?
• How do we educate clinicians and biomedical informaticists about personalized healthcare?
• Who has programs, centers, initiatives around PH? What barriers or obstacles have you encountered? What lessons have you learned?
11:00 to 12:00 PM - Harvesting of Ideas from Breakout Sessions
Stan Huff – Facilitator
TBD – Scribe
12:00 to 6:30 PM – Free Time/Collegial Activities
6:30 to 9:45 PM – "Black Tie Optional" Dinner and Dance
6:30 to 7:30 PM – Reception – 5th Floor Fountain Area
7:30 to 9:30 PM – Dinner and Dance – Del Prado
Sunday, February 22, 2009
7:00 to 8:00 AM – Continental Breakfast – King Charles
8:00 to 10:30 AM – Day Three Scientific Session – King Charles
8:00 to 10:30 AM – Small Group, Report Back, and Discussion
Stan Huff – Leader
• Recommendation Generation and ACMI's Role Going Forward
• Prioritization Strategy and Vote
• Discuss and prioritize the most important issues, and then prioritize and summarize the most important tasks and action items for ACMI (the organization), ACMI members, and any recommendations to AMIA or other groups. Identify responsible individuals and plans and timelines for moving forward.
