Fomenting Collaborative Science

FasterCures co-hosted with Esquire magazine what has become an annual intellectual smorgasbord focused on how to foster more innovation in the conduct of medical research. The theme running throughout our afternoon’s discussion was new tools for fostering collaboration in science, and I was struck by how the medium matched the message. Once again we gathered people from all across – and outside – the disease research and therapy development spectrum; heads of nonprofit disease research foundations mixed with business innovators mixed with Internet gurus etc. The energy and synergy in these gatherings is always palpable, as people are exposed to new people and ideas that they don’t necessarily encounter in their everyday work.

The place itself encourages you to switch off your left brain for a few hours and let the right brain take over. This latest incarnation of Esquire’s “Signature Spaces” was a three-level penthouse with awe-inspiring views across New York from Central Park North. Two participants began a side meeting they’d scheduled by going head-to-head on the Indy car racing video game in the game room. Over lunch in the media room, I got an impromptu demonstration of how nonprofits are networking in Second Life by Susan Tenby (a.k.a. “Glitteractica Cookie”), the creator of the Nonprofit Commons in SL; she introduced me to several of her colleagues online, who talked persuasively and passionately about the support and resources they’ve tapped into in this online world. (The American Cancer Society raised more than $120,000 in a virtual walk-a-thon this year!)

Our conversation during the afternoon was, as usual, artfully orchestrated by Greg Simon, President of FasterCures, whose right brain is fully engaged in his work on a normal day. I found most thought-provoking our forays into two topics: how new frontiers in information technology, such as the Semantic Web and virtual worlds like Second Life, create new platforms for participation in the life sciences and the nonprofit sector; and how different models of prize philanthropy can bring the wisdom of the crowd to bear on medical research challenges, small and large.

John Wilbanks, Executive Director of Science Commons, talked about how the Semantic Web gives us the tools to create an “open source knowledge management platform for biological research” that will allow researchers to make connections between what they observe, what is known, and what data and materials are available for research much more quickly. Susan Tenby challenged us (many of whom have barely mastered instant messaging) to imagine the possibilities that a virtual world like Second Life holds for creating meaningful interactions not only among people but between people and data.

Tom Vander Ark, President of the X PRIZE Foundation, and Dwayne Spradlin, CEO of Innocentive, educated us about the power of their prize models (each very different – the former top-down, the latter bottom-up) to “crowd-source innovation” by defining a problem and then opening up the solution to the widest possible audience. In one of the most fascinating data points of the afternoon, Spradlin said that “solvers” in their system come on average from “six disciplines away” from the “seekers” who post challenges. Innocentive has posted several challenges by nonprofit groups, including a prize for ALS biomarkers, and is very excited about the promise that its model holds for nonprofits across the spectrum. X PRIZE is working with the Robert Wood Johnson and Lance Armstrong Foundations to define “grand challenges” in healthcare and in cancer that would be appropriate for prizes.

We at FasterCures believe that the scarce resources in the search for cures are neither money nor places to invest it; the scarce resources are time and information. We're thinking about how all these new technology tools and management strategies to leverage resources, promote innovation, and build collaborations can be used to shrink information gaps and the scientific research cycle.

But despite our belief in the collaborative power of information technology, it’s nice to be able to get together in a penthouse in New York every once in a while, too.

Kristin Schneeman, Project Director, FasterCures

Kristin Schneeman joined FasterCures in April 2005. She brings to the team more than fifteen years' experience in public policy, politics, academia, and the media. Kristin served for three years as a senior adviser and policy director to a gubernatorial candidate in Massachusetts, as a policy aide to a U.S. Congressman, and for four years as the front-line manager and chief-of-staff for a senior adviser to Vice President Al Gore. At Harvard University's Kennedy School of Government she directed a research project – the top priority of the Dean of the School – on future challenges facing governments, and at Harvard Business School she worked with a noted professor who specializes in analyzing and advising on complex negotiations in business, politics, and international relations. Kristin began her career as a producer of documentary films on political and social issues, for which she was the recipient of an Emmy Award in 1990.

Be Bold

One of my favorite inspirational quotes is Basil King’s “Be bold and might forces will come to your aid,” though I have to admit I first heard it uttered by the strong and sympathetic mother Frances McDormand in Cameron Crowe’s movie Almost Famous.

It is a great sentiment, inspiring, and hopeful. It is the belief that a dramatic act will not be in vain, that some how, somewhere the universe will not abandon you.

So when I read in the recent Boston Globe article by Liz Kowalczyk, “NIH Funds Local Teams for Daring Research,” I was heartened to learn that somebody at NIH concurred with my thinking.

NIH has recently launched a $483 million initiative “to support daring, difficult research that has the potential to solve intractable medical problems and transform patient care.” The first round of funding has gone to nine teams nationwide, with teams receiving between $21 and $25 million.

As Kowalczyk correctly points out “NIH traditionally awards most research grants - typically about $250,000 each - to individual doctors and scientists whose work has a high likelihood of success. But hoping to turn a new page on how research is done, the agency has set aside 1.7 percent of its budget in a sort of venture capital fund for large, multidisciplinary projects that are riskier but have a huge potential payoff.”

One Boston based research group intends to explore daring and difficult research as it attempts to grow heart valves, parts of a pancreas, and a tooth. Another research group hopes to improve the drug discovery process utilizing the data from genes being linked to human diseases in an effort to identify potential treatments. These projects will bring together scientists from different fields to tackle issues that have been resistant to traditional approaches. In the case of the organ project, the team includes a cardiac surgeon, two mathematicians, computer specialists, and tissue engineers.

As Dr. Alan Krensky, Director, Office of Portfolio Analysis and Strategic Initiatives NIH, which is funding the project says, “This is knock-your-socks off science.”

Who knows if the grant awardees are going to be successful? Who knows what new knowledge will be derived from their research? What is known is that we have to continue to think this way when it comes to medical research. We have to be willing to try approaches that haven’t been tried before. We need to be able to think differently about what will and won’t work. We need to be open to fail in our pursuit for cures, for with each failure more is learned

We need to be bold, and who knows what mighty forces will come to our aide.

Patrick Morris, Vice President of External Relations and Communications, FasterCures

Patrick joined the FasterCures in October of 2006. Patrick has over eighteen years of government and communication experience, at both the federal and local level. He has worked in both chambers on Capitol Hill, serving as Press Secretary to Wisconsin Senator Herb Kohl and as Communications Director to Oregon Congressman David Wu.

To read the Boston Globe please visit: boston.com/news/local/articles/2007/09/06/nih_funds_local_teams_for_daring_research

Information is Power

In Tara Parker-Pope’s Health Journal column, “Lessons Learned From Doctors, Patients, and My Mother,” in last Tuesday’s Wall Street Journal she talks about her mother’s experience with esophageal cancer. In this excellent piece, she writes, “Taking charge didn’t save my mother’s life, but it made the end of her life better, and gave all of us confidence in her care and the choices she made.” She goes on to write, “She believed, just as I do, in the power of information to save a life, even if it wasn’t her own.” We couldn’t agree more.

On the day her mother received her diagnosis, an estimated 1.3 million other Americans were diagnosed with cancer. Some are highly treatable. However, for others treatment eludes us. The road to treatment is paved by clinical trials. At FasterCures we focus on how we can educate more people about the central role clinical trials play in scientific advances. Clinical trials fuel the drug discovery process and ultimately lead to better treatments and cures. Nevertheless, the process remains a mystery to most. As a nation, we need to put more emphasis on helping the public understand the process of clinical research and innovation – experiment, evaluate, redesign, and experiment.

When patients enroll in trials, survey data shows that clinical trial participants feel overwhelmingly positive about their experience, believe they are treated with dignity and respect, and receive good to excellent care. And yet we know that fewer than 5 percent of adult cancer patients enroll in trials each year.

Clinical trials won’t be the right fit for everyone. My father found his way into a clinical trial after his leukemia diagnosis two years ago, and Ms. Parker-Pope’s quote about how the information didn’t save her mother’s life but it made the end of her life better resonated with my dad’s experience. His clinical trial participation gave meaning to his diagnosis. His access to a top-notch cancer center and experts in the field gave him hope that there was an infrastructure churning towards treatments. He was highly motivated at the prospect of participating in a clinical trial that might help him, but more importantly would help provide valuable information to finding treatments for others.

Information is power and can be empowering. My family will soon remember the two-year anniversary of my dad’s death, and we will honor his contribution to leukemia research. At FasterCures, we are working to ensure that others are offered the information about clinical trials, for everyone’s benefit. Thanks Dad.

Margaret Anderson, COO, FasterCures

Love isn’t all that is blind

So is cancer…but so is conviction.

I had the pleasure of attending a reception this week at the Susan G. Komen for the Cure Annual Mission Conference. Per my expectations, the bustling room was filled with brave survivors, accomplished scientists, and visionary activists fully accessorized with their pink ribbons. What I was not expecting was the diversity of participants that crossed age brackets, races, and geographies.

Based on data from the American Cancer Society, breast cancer is the most frequently diagnosed cancer among almost every racial and ethnic group. Women of African American, Hispanic, Asian American, and American Indian descent were there to reaffirm the Susan G. Komen for the Cure vision and lead their charge in advising the organization with respect to these particular populations. I also made the acquaintance of women who traveled thousands of miles from Jordan and the United Arab Emirates to represent The Middle East Partnership. This is the first partnership for breast cancer between the United States and the Middle East in efforts to build capacity, raise awareness, and increase collaborative research within the region. Finally, I was taken by the youth of some of the participants. Although less than 5 percent of all breast cancer cases occur in women under age 40, I met women as young as 21 who were cancer survivors themselves. They were energized to strengthen disease awareness and promote prevention initiatives among their peers.

Was the attendance of these groups a dismal indication of the far-reaching prevalence of the disease and cancer’s blindness to ethnicity, generation, or continental border? Perhaps to some. But to me, their participation was the manifestation of a greater conviction -- that a unified, cross-cultural, and comprehensive approach to awareness, prevention, screening, treatment, research, and empowerment could bring about great change. And that well-coordinated, global and multi-generational efforts could bring about both a stronger fight and faster cure.

Melissa Stevens, Director of Special Projects, FasterCures

Melissa Stevens joined FasterCures in June 2007 as Director of Special Projects and Interim Project Director for the Philanthropy Advisory Service initiative. She comes to FasterCures from PricewaterhouseCoopers where, as a Manager in their Health Sciences Advisory Practice, she lead large teams in providing strategic, operational, and business planning services to commercial and federal clients across the healthcare continuum.

Melissa has served academic medical centers, private research institutes, and large health systems in developing strategies for implementing clinical and translational research programs, designing conceptual models for collaboration, and assessing infrastructure to support research enterprises. Melissa received both her B.S. in Biochemistry and her M.B.A. from the Pennsylvania State University.

It’s about Cancer, Stupid.

Lance Armstrong’s cancer forum is putting the wrong people under the lights. Even if the presidential candidates found a cure for cancer right there on stage, with the way the media covers politics the rest of us would never know. How is it possible that after discussing their approaches to winning – dare I say it – the war on cancer -- the headlines are about which candidate is willing to take which lobbyists’ money? I thought journalists were taught not to bury the lead. Well the lead is the toll in death and suffering cancer is taking, not the campaign contributions candidates are taking.

The press continues to confuse healthcare economics with curing diseases. The benefit of Lance’s gathering is it forces candidates to go beyond the “more money” argument and into how they would change something. In a discussion about curing and surviving cancer, it is folly to debate which lobby groups are “acceptable” as donors. The last time major health players were left out of the game, they defeated a popular President by putting two actors playing man and wife sitting around a kitchen table shaking their heads. If we are going to create medical solutions for cancer, we will need everybody at the table with open minds, collaborative natures, and valuable human and financial resources. And not shaking their heads.

Lance was right to ask the field of future Presidents how they would attack cancer. Now let's start asking the press to cover the answers and not let them change the subject to pick silly fights.

Greg Simon, President, FasterCures