Venture Philanthropy’s Next Chapter

by Margaret Anderson, COO, FasterCures

The story of venture philanthropy in medical research is getting told with even greater frequency lately. Many of its leaders are on the road constantly presenting about why their organizations came to be, what strategies they use to understand the root causes of their diseases, and what they are doing to support translational research. This was the central question of an Institute of Medicine (IOM) Forum on Neuroscience and Nervous System Disorders meeting in early October.

At FasterCures, we work with many of these groups through our TRAIN initiative. We released the “Entrepreneurs for Cures” report that articulates the reason many of these groups were formed: that their only bottom line is curing disease and improving the lives of patients.

At the IOM meeting, some of the problems in reaching cures were restated before the group dove in to the various approaches and models that the venture philanthropy groups use to move the needle. The statistics about drug development are a stark reminder of the enormous challenges facing biomedical research and the quest for faster cures. Despite increasing knowledge and investment in R&D spending, drug registrations are falling and the investment costs per successful drug launch has escalated in recent years. For many diseases, treatments – let alone advances – are few and far between. The ‘valley of death’ in drug development is a story that venture philanthropy groups know all too well.

The tag lines for the meeting could have been “Focus, Focus, Focus” with a healthy dose of “If you don’t know where you are going, any road will get you there.” Two themes that are particularly poignant in today’s economic climate. With each day’s headlines of the stock market tumbling to new lows, there is a greater sense of uncertainty about how this will impact medical research philanthropy. Groups need to be laser-focused, and they need to have an action plan.

Dick Insel of the Juvenile Diabetes Research Foundation pointed out that doing this work requires that you know your product, partners, and yourself to be effective. Expectations between partners need to be aligned. In terms of knowing yourself, he pointed out the importance of managing expectations with donors and the patient community, and also the balance between hope versus hype in doing disease research. Sophia Colamarino of Autism Speaks described how patients and in the case of autism, the parents of patients have to be brought into the research process and need translation services. And when there are accomplishments, they have to be given credit too. Everyone agreed that knowledge needs to be constantly pushed out to many audiences in order to move closer to the goal. The scientific community needs it, industry needs it, and of course patients need information to know how new findings get mapped against the search for cures.

Katie Hood of the Michael J. Fox Foundation spoke of how the value-add they bring is that her group is constantly looking at what worked and didn’t work, and what MJFF needs to do to increase the odds of success of what they are funding. She also noted that the valley of death is not the same for each disease, and that venture philanthropy groups need to create a roadmap. Each group should ask what unique value is of what they bring to the table, and how they can target everything towards that goal.

These groups often talk about milestones, and the requirements they place on grantees when they get their funds. Some groups pointed to examples where they stopped or held payments. This requires active management and forecasting of the research portfolio. Some described how the goal was to bring more partners and players into their fields, and they saw their role as lowering those barriers to entry.

One participant summed it up, “Nobody has the incentive to think about our disease process like we do.” Jonathan Simons of Prostate Cancer Foundation talked about their metrics in plain and simple terms – lives saved and a reduction in the death rate.

Someone pointed out that the role of these groups is to shine a light on what is possible in disease research. Indeed they do. Next challenge, how do you spread this line of thinking and these tactics even farther?

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From Social Entrepreneurship to Cure Entrepreneurship

by Cecilia Arradaza, Communications Director, FasterCures

Social entrepreneurship has attracted scholarship, media attention, and financial resources over the last decade. Social and professional networks have emerged from this discipline. Medical research has been largely missing from the dialogue and the discipline, even as it seeks to address a market failure no less important than other social enterprises – the development of therapies that cure disease and alleviate suffering.

More than 30 senior leaders from organizations that fund medical research and those from the broader sphere of social entrepreneurship convened a week ago at what has become an annual leadership forum on medical research innovation brought together by FasterCures and Esquire magazine. The meeting explored what lessons have been learned by social entrepreneurs that might be applied by those pursuing what FasterCures calls "cure entrepreneurship," or novel approaches to accelerating the process of treating and curing disease.

Much of the discussion during the day centered on the need for better information flows about what work is being done, by whom, and its quality; the need for better communication about why new approaches are needed and the promise they hold; and the need for nonprofits to find creative ways to leverage their relatively small funds into larger investments into new therapies. There was also a common focus on the centrality of patients and the transformative nature of empowering them to play a greater role in research.

The social entrepreneurs and cure entrepreneurs in the room found a lot of common ground. In part because both distinct sectors function in a similar nonprofit space where success is often the result of effectively leveraging the assets that it creates. It was noted however that the social business model is difficult to achieve in medical research because of its cost implications. Throughout the day, participants alluded to the need for unconventional solutions, unusual channels to reach nontraditional audiences, outcomes-focused collaborative efforts, and ideas that could be acted on in real-time by the right people.

Perhaps the meeting’s location, set in a swank, Architectural Digest-ready mansion in Hollywood Hills triggered the right brain to yield more inspirational ideas. Perhaps it was the collective braintrust in the room that stimulated an engaged energy and infused thoughtful intrigue that are often absent in more typical conferences. Greg Simon, FasterCures’ president aptly set the tone when he said in his welcome remarks that “we do not need to go somewhere, we just need to be somewhere…”

Indeed, we were somewhere. It was a place where we tried to create an intersection between social entrepreneurship and medical research philanthropy – an ecosystem to support the work of cure entrepreneurs. It was a place where ideas reigned and the seemingly impossible task of challenging our biomedical research system to produce results was not a far-fetched goal. The meeting reinforced the unique role that FasterCures can play in helping to build a "knowledge commons" to accelerate medical research – whether that is collection of the best organizational practices of TRAIN groups, or continued work on the Philanthropy Advisory Service to make transparent information about the most effective medical research foundations, or perhaps an entirely new project to escrow vetted but unfunded proposals from funders. Additionally, meeting attendees urged FasterCures to focus on the idea that philanthropy is a whole new capital market in need of rules and auditable facts.

As the context we all are a part of changes dramatically by the day, last week’s meeting was a place to start, an opportunity to put some markers on important work that needs to continue if we, as a nation, are serious not just about reforming our broken healthcare system, but also about fixing our broken health cures system.

Related Blogs:
Common Knowledge's The Unknowns by John Wilbanks
http://scienceblogs.com/commonknowledge/2008/11/the_unknowns.php

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