Genetic Alliance 25th Anniversary Annual Conference: Research Daylong Symposium

Genetic Alliance 25th Anniversary Annual Conference: Research Daylong Symposium

Innovation: What is my Responsibility?

Workshop to Innovate
June 24, 2011
Bethesda North Marriott

 

Forty years ago, John F. Kennedy made this famous declaration at his Inauguration: “… ask not what your country can do for you - ask what you can do for your country.” It is incumbent on us to ask “What is my responsibility in this quest to accelerate diagnostic and therapy development?”

Innovation. Easy to say. Modern sounding, and even trendy: President Obama used the word ten times in his State of the Union address and has launched a couple of programs focused on it since then.

Innovation rides the edge between the selflessness of the Kennedy statement and the competitiveness in Obama’s directive that Americans ‘out-innovate’ everyone else. This year we took a deep dive into this space, and asked, “How is it my responsibility to live in dynamic tension with these two poles? How can I liberate energy in systems bound in one direction or the other, to accelerate translational research and implementation science?”

Steve Jobs said, “Innovation has nothing to do with how many R&D dollars you have... It's not about money. It's about the people you have, how you're led, and how much you get it.”  We get it. We need to get it, we need to lead. During this session, participants took this leap together.

We’ve all been in meetings and conversations where the problem is ‘them’. We come to the resolution together that we don’t have the diagnostics and treatments we need because [fill in the blank: companies, academics, regulators, investors, the public, patients, etc.] don’t do their part, are greedy, are selfish, have the wrong motivations… It’s time to get over this and get to work. This requires that we are each responsible for the whole, and we step into each other’s roles. In this workshop, we rolled up our sleeves and created cooperative teams to develop viable solutions.

Agenda

7:30 a.m. – 8:00 a.m.
Registration and Welcome Breakfast
8:00 a.m. – 8:30 a.m.
Opening Session: A Charge for Innovation
8:30 a.m.
Welcome and framing the day

Stephen Friend, Sage Bionetworks
Sharon F. Terry, Genetic Alliance

8:45 a.m.

 

 

How to fundamentally change drug discovery: Sharing data and Arch2POCM

Stephen Friend, Sage Bionetworks

9:15 a.m.
Data Sharing as a Means to a Revolution

John Wilbanks, Creative Commons

9:30 a.m.
THAT’SMYDATA: a campaign to empower the citizen scientist

Sharon Terry, Genetic Alliance

9:45 a.m.
How To Help Science Pay More Attention To Your Disease

Aled Edwards, Structural Genomics Consortium

10:00 a.m.

 

 

Evidence, Outcomes, and Coverage Decisions for Diagnostics, Treatments and Access to Services

Patrick Terry, Scientia Advisors

10:15 a.m.

 

 

Activating Citizen Scientists – Accelerating health discoveries through participant-driven science

Greg Biggers, Genomera

10:30 a.m.
Break

11:00 a.m.
An Experiment in Shifting Incentives

Scott Sacane, Catalytic IP

11:15 a.m.
Engagement exercise with participants

Consider the difficult questions each speaker posed and then reflect on our usual behavior – How can we:

  • Think beyond our current structures?
  • Freely share data and ideas?
  • See ourselves as citizen, scientist and patient?
  • Allow their piece of the healthcare enterprise to grow beyond stale legacy systems?
  • Understand that we are THE engineers for innovation and solutions?

12:00 p.m.
Lunch

1:00 p.m.
Workgroups

Each workgroup enabled stakeholders from the advocacy, research, clinical and policy communities to innovatively redesign the specific topic area.  Facilitators expected participants to relinquish their intellectual property, to let go of the fears that immobilize, and to find the drive that emanates from what truly matters, with kindred spirits.  Then – design the new world on the microcosmic and macro level. 

Breakouts:

  • THAT'SMyData!
  • Citizen Science
  • Arch2POCM

3:30 p.m.
Return and share plans

5:30 p.m.
Conclusions, Mandates and Marching Orders

 

Back to conference agenda

Combined Federal Campaign (CFC)
#80146
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008-2369
Tel: 202.966.5557 Fax: 202.966.8553
info@geneticalliance.org