If you were registered or played the game, you can still log in, view cards and comment in the blog (The link to the blog is located in the upper left-hand corner of the page.)

The IFTF is currently reviewing and analyzing the data that was gathered at both games. We will hear more about that next month.  In the mean time, we at the MRF are considering the ways in which we can keep the conversation alive and offer a venue for those who are interested in connecting with one another outside of the game to advance their own ideas. If you have thoughts about that, please share them with us in the game blog.

If you know folks who did not register but would like to review the game play and participate in the blog discussion, ask them to register. Once registered, they will be able to participate.

Please note, the game is no longer live so new cards cannot be played. But there is much to review and think about from the game play of others.

Thank you again for your formidable participation.

Though the scenario for this game was fictionalized in the year 2020, today there are many, many individuals and their families living with neurological diseases for which there are few effective treatments or cures. It is our hope that through this game we can raise awareness about the challenges facing medical research and drug discovery and promote an open discourse on ways that the system can function better for patients.

Please take your own personal learnings from this game and keep them alive. Continue to educate yourselves and others about the roadblocks that are hampering progress and make the small changes you can in your workplaces and homes. There will be change when the needs of patients come first.

And thank you to the Robert Wood Johnson Foundation Pioneer Fund for supporting this important project.

Chime in! Below are some ideas, but I’m sure y’all have some ideas of your own.

Technology

• Computational Strategies
• Genomics
• Personalized Medicine

Some Articles to Read:

• Ewing Marion Kauffman Foundation: “Assessing Risk & Return: Personalized Medicine Development & New Innovation Paradigm”— October 2008.
• Newsweek: We Fought Cancer…And Cancer Won – September 6, 2008

Thank you Q1 for sharing your ideas!

Let’s take these great ideas a step further ….

Imagine you are on the design team:

• what different scenarios might you envision?
• what areas would you want to explore?
• what would you imagine designing?
• what methods/process would you introduce?
• when would you apply them?

Several Breakthroughs players argue that cures may come faster if researchers are more transparent in their operations and if data is provided openly and for free to the public.

Today, several problems exist:

- We do not have access to studies until they have been completed and subject to review.
- The selected few studies that are published then are visible to another relatively small audience (those who have access to journals)
- Relatively few people are able to interpret scientific research and must rely on politicians, journalists and advocates to translate research into actionable information.

I have long believed in free, open access to research data – and frustrated by the lack thereof – but I have been encouraged by players’ clever ideas about how to make this happen and what the implications would me. Tell me – what do you think would happen?

Posts of note:
- Work on addressing roadblocks at FDA-more interactivity and openness about early impressions of data and trial design / As mentioned re: clinical trial acceleration: We need more transparency into FDA’s opinions at early stages of trial design, encourage more telephonic interviews – Callooh
- Create a secure eHealth platform, SDK and data aggregator and invite the open source community to create apps for crowdsource analysis. – Rock
- Create a virtual environment where current findings are made available to all interested parties. Provide points for advancing ideas. – easteger
- Incentives for research groups with open-data and information sharing. Coordinate efforts to reduce competition and duplicated trials.(next) – katie.odette
- (Related) Create shared spaces/equipment and facilitate partnerships between citizen scientists and traditionally trained scientists. – bradganistan
- Create online journal forum that allows “thought” pieces and paradigm shift articles by amateurs w/ mnml merit filter NOT status/peer-based – kate_e
- Non-profit “reverse peer review” journal: open access, authors anonymous, reviewers named, open for comment for x mon. Then reveal authors. – BCC
- Publishing & peer review innovation–> open access to all publications, FT blinded review boards, merit not connection, value not quantity – kate_e
- Reduce transaction cost barriers to affected people participating in research by facilitating open access platform 4 contribution of tissue, phenotypic info – Michelle
- Provide funding for the release of scientific and technical open courseware from universities into the hands of the public. – emdaniels

* other themes running through: Changes to the peer-review process; allowing patients to be actively involved in participating in, and even running, clinical trials; increased collaboration between citizen scientists, researchers, and patients; free science education

These are just a few of the ideas that came up, and this is what I offer in my short time as a game guide. However, these problems are not going away. I hope that Breakthroughs to Cures plants the seeds of innovation in your minds, and that you come back to us with ideas that will change the world…

Interested in doing research of your own in Silicon Valley? Please send me a note! eri@biocurious.org

And think about what the biggest obstacles are in making this change.

Thank you, Michael, for sharing your thoughts!

Follow this link to play your cards – http://foresight.breakthroughstocures.org/experiments/1?play=pos

As many of you already know the Myelin Repair Foundation is one of the few nonprofit research organizations that is trying to innovate the entire medical research system and is leveraging the special role that a nonprofit can play (intermediating between academia and industry players).

Read more about the Myelin Repair Foundation model and how it works:

• The Accelerated Research Collaboration Model
• Fast Company magazine “The Myelin Repair Foundation Encourages Collaboration for a Cure” (Nov. 1, 2010).
• The Myelin Repair Foundation was featured on the PBS Newshour segment “‎For Scientists, Collaborative Efforts Could Speed Medical Advances”(Sep. 23, 2010).
• Myelin Repair Foundation: Where are the Cures?  A Summary.
• Arabella Advisors:  Issue Brief on “Investing in Innovative Medical Research” – 2010.
• Silicon Valley/San Jose Business Journal: Foundation’s research model in Saratoga aims to halve clinical trial time. — October 16, 2009.

Think of how more nonprofits could play a role and where there are other unmet needs that could be filled by them. Conversely, think about what challenges would make engagement impossible for nonprofits.