March 9 and 10, 2017 Bethesda North Marriott (DC Metro area)

Transcription

1 March 9 and 10, 2017 Bethesda North Marriott (DC Metro area) Genetic Alliance is celebrating its 30 th anniversary this year. Consistent with our desire to always focus on what matters, this meeting will assess four areas we believe are critical to ensuring the learning health system focuses on outcomes that matter to people. Now, as we face a transition point with the beginning of a new administration, it is essential we create a shared vision. In this, we will consider tensions in health/healthcare from services to research to public health. This will be a highly interactive conference, with a blend of the best of grassroots organizing and unconference. Participants will engage each other with the goal of concrete outcomes for the meeting. Thought leaders in the four areas will lay the groundwork and guide us to work with each other to design projects that will advance health. The outcomes will be tangible projects that can be accomplished by formal and informal networks present at the meeting and beyond. The participants are disease advocacy organizations leaders, citizen scientists, crowdsourcing folks, forward-thinking clinicians, researchers, health systems leaders, policy makers, and federal agency staff. 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

2 Agenda Thursday, March 9, :30-8:30 AM Registration/ Check-in/ Breakfast 8:30-8:45 AM Welcome and Orientation to the Day 8:45-10:00 AM Opening 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. 1. Engagement: National and/or local approach Melissa Creary, Assistant Professor, Department of Health Management and Policy at University of Michigan School of Public Health 2. Addressing disparities and access Jane Delgado (invited), President and CEO, National Alliance for Hispanic Health 3. People centered design in health TBD 4. High touch and/or high tech Steve Downs, Chief Technology and Strategy Officer, Robert Wood Johnson Foundation 5. Radical innovation and/or iterative improvement Doug Dietz (invited), GE Healthcare 10:00-10:30 AM Break 10:30-12:30 PM Breakout Sessions I Continuing discussion on topics, participant-generated specifics, honing the issue to possible projects Facilitators will kick off the breakout with a few visionary proposals specific to the topic area (disparities will be considered by all): o People centered design in health o Engagement: National, local, and/or some combination o Radical innovation, transformation, and/or iterative improvement o 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

3 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. 12:30-2:00 PM Lunch and Plenary Presentation Kristin Hayden, Founder, VisionVenture; Chief Partnership Officer, Ignite 2:00-3:30 PM Breakout Sessions II Refine the solutions what steps can we take to collaborate to solve the problems laid out in the first session? Small table work, then rotate small tables and refine further 3:30-4:00PM Afternoon break 4:00-5:30 PM Closing Panel on the state of the four topics Reception and Dinner Celebration 5:30-6:30 PM Registration/ Check in/ Cocktail Reception 6:30-9:00 PM Dinner Celebration We will celebrate as a community. No long speeches fun, light, and uplifting! Toasts by Genetic Alliance family including our founder Joan Weiss, our former Executive Director Mary Davidson, and many of our friends old and new. And, as usual, a song or two by a famous musical scientist.

4 Friday, March 10, :30-8:00 AM Registration 8:00-9:00 AM Networking Breakfast 9:00-11:00 AM Breakout sessions 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 Presentation of Solutions 12:30-1:30 PM Lunch 1:30-2:00 PM Sign up for ongoing workgroups volunteer leaders 2:00-3:00 PM Closing Keynote Reed Tuckson, Managing Director, Tuckson Health Connections

5 Facilitators Nick Anderson, Director of Informatics Research, UC Davis Rebekah Angove, Community Engagement Manager, Louisiana Public Health Institute Kemp Battle, Council Member, Genetic Alliance Jason Bobe, Co-founder and Program Director, Open Humans Natasha Bonhomme, Vice President of Strategic Development, Genetic Alliance Whitney Bowman-Zatzkin (invited), Director, Flip the Clinic Kathy Brill, Executive Director, Parent to Parent USA Alia Crum (invited), Assistant Professor of Psychology, Stanford University Rachael Fleurence, Director, Patient Centered Outcomes Research Network (PCORnet) Shantanu Gaur, Council Member, Genetic Alliance Seth Ginsburg (invited), Creaky Joints and the Global Healthy Living Foundation Andrea Goodman, Director of Network Activities, Genetic Alliance Mathew Harker, Program Lead, Evaluation Hub of Duke-Margolis Center for Health Policy at Duke Clinical Research Institute Crane Harris, Director, Business Development at Illumina Kiely Law (invited), Research Director, Interactive Autism Network Howard Levy, Assistant Professor of Medicine at the Johns Hopkins University School of Medicine Usama Malik, Council Member, Genetic Alliance Ben Nowell (invited), Executive Director, Global Healthy Living Foundation James O Leary, Chief Innovation Officer, Genetic Alliance Bray Patrick Lake, Director of Stakeholder Engagement at Clinical Trials Transformation Initiative/Director of Patient Engagement Duke CTSA Casey Quinlan, Precision Medicine Advocate, Cure Forward Corp. Al Richmond, Executive Director, Community Campus Partnerships for Health Reed Tuckson, Managing Director, Tuckson Health Connections Jennifer Wagner, Associate Director of Bioethics Research, Geisinger Health System Consuelo Wilkins, Executive Director, Meharry-Vanderbilt Alliance, Neely Williams, Co-PI on the PCORnet Obesity Research Study