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Co-Creating A Healthy Future: Agenda

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Genetic Alliance is celebrating its 30th anniversary. Consistent with our desire to always focus on what matters, this meeting assesses four areas critical to a learning health system, focused on outcomes that matter to people. Now, as we begin a new Administration, it is essential we create a shared vision. We consider tensions in health: from services to research to public health systems.

This is a highly interactive conference, with a blend of the best of grassroots organizing and unconference. We engage with the goal of concrete outcomes, laying the groundwork in each of the four areas and guiding us to work with each other to design projects to advance health. The outcomes will be tangible projects accomplished by formal and informal networks present at the meeting and beyond.

Areas of Focus:

  1. Engagement: A national and/or local approach
  2. People-centered design in health
  3. High touch and/or high tech
  4. Radical Innovation and/or iterative improvement



Thursday, March 9, 2017

7:30- 8:30 AM   Registration and Breakfast
8:30- 9:15 AM  

Awareness, Choice, Hope - Sharon Terry, President and CEO, Genetic Alliance
Participant-centric Focus - Joe Selby, Executive Director, Patient Centered Outcomes Research Institute

9:15– 10:30 AM  

Plenary Session

Considering tensions in health from services to research to public health, thought leaders lay the groundwork for us to work with each other to design projects that will advance health.

  • Blinded by Stereotypes: Focusing on the Individual – Adolph Falcón, Executive Vice President, National Alliance for Hispanic Health
  • Engagement: National and/or local approach – Melissa Creary, Assistant Professor, Department of Health Management and Policy, University of Michigan School of Public Health
  • People centered design in health – Whitney Bowman-Zatzkin, Director, Flip the Clinic
  • High touch and/or high tech – Steve Downs, Chief Technology and Strategy Officer, Robert Wood Johnson Foundation
  • Radical innovation and/or iterative improvement - Shantanu Gaur, Co-Founder, Allurion Technologies
10:30- 11:00 AM   BREAK
11:00- 1:00 PM  

Workstreams - Act I 
Equity will be considered throughout:

  • People centered design in health
  • Engagement: National, local, and/or some combination
  • Radical innovation, transformation, and/or iterative improvement
  • High touch and/or high tech
Together, the participants will explore solutions using these different perspectives as a guide. Facilitators will share their “assumptions,” because perspective often dictates value. In addition, we will consider long-term wins vs short-term gains and the impact on resource allocation. The participants will determine how to best use the time over the two days in this topic.


1:00- 2:15 PM   Lunch and Plenary Presentation - Regina Holliday, Founder, Walking Gallery and the Medical Advocacy Mural Project
2:15- 3:45 PM  

Workstreams Act II

Refine the solutions – what steps can we take to collaborate to solve the problems laid out in the first session?

3:45– 4:15 PM    BREAK
4:15- 5:00 PM  

Closing Panel: State of the Four Topics


Reception Dinner & Celebration

6:00– 7:00 PM   Cocktail Reception and Positive Exposure Exhibit, Rick Guidotti, Founder
The Positive Exposure exhibit explores the social and psychological experiences of people living with genetic conditions of all ages and ethno-cultural heritages. This impressive and powerful collection of imagery, film and narratives celebrates the richness and beauty of human diversity and dignity.
7:00– 9:00 PM  

Dinner Celebration

We celebrate as a community: fun, light, and uplifting! In lieu of long speeches, toasts by Genetic Alliance family include: founder Joan Weiss, former Executive Director Mary Davidson, and many friends – old and new. And, as usual, a song or two by a famous musical scientist.

Friday, March 10, 2017

7:30- 8:00 AM   Registration
8:00- 9:00 AM  

Networking Breakfast - Topic Tables and Open Tables
People Driving Research Priorities
Patient Navigation
Participants will determine other table topics

9:00- 11:00 AM  

Workstreams Act III 

Four topics and one ‘anarchy’ session for those who don’t feel any of the topics fit them

  • Choose a project group where you would like to put your energy.
  • Plan this project, including goals, outcomes, and metrics
  • Determine where this project can flourish – which existing network or organization can lead, or do we need a new one?
11:00– 11:30 AM   BREAK
11:30- 12:30 PM   Presentations of Solutions
12:30– 1:30 PM   Lunch
1:30– 2:30 PM   Keynote Address - Reed Tuckson, Managing Director, Tuckson Health Connections
2:30– 3:00 PM   Unveiling of conference painting - Regina Holiday, Founder, Walking Wall Gallery and the Medical Advocacy Mural Project



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4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

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