Venture Philanthropy Strategies to Support Translational Research Workshop Summary (2009) / Chapter Skim
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4 Partnerships, Data Sharing, and Intellectual Property
4 Partnerships, Data Sharing, and Intellectual Property
Pages 37-46
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From page 37... ...
A fundamental task for voluntary health organizations supporting a translational research program is creating and managing networks and partnerships. The importance of collaboration and coordination between academics, the National Institutes of Health (NIH)
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From page 38... ...
Partnering with the NIH gives a voluntary health organization's efforts credibility in the research process that might be missing if the agenda were driven solely by the organization, according to the workshop participants. Further, voluntary health organizations and the NIH are not competing entities but are instead tremendously complementary.
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From page 39... ...
When collaborating, these entities support each other: The NIH provides critical research funding in areas such as biomarkers, while voluntary health organizations can help guide the NIH agenda by sharing the results of translational research. Building Credibility Through Partnerships A voluntary health organization is often the most obvious, most easily accessible expert in a disease space.
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Venture philanthropists step into the translational research gap, funding research that makes future industry investment more attractive and, in fact, possible. The voluntary health organization's role in connecting the dots between academia and the clinic can go beyond simply awarding grants.
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From page 41... ...
"Some data and resources may as well not exist because you cannot access them," said Sharon Hesterlee, vice president of translational research at the Muscular Dystrophy Association. Workshop participants discussed the silo phenomenon throughout the day in many guises: animal models behind laboratory doors, valuable data from failed research endeavors, narrowed funding sources, even varied research methodology.
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From page 42... ...
The key to successful data sharing, according to Hesterlee, is to make sure that the voluntary health organization has defined its goals, that all the partners are aligned, and that a good collaborative structure is in place. Ethics in Data Sharing The construction of biobanks and patient registries raises not only policy and process issues, but ethical questions.
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From page 43... ...
These kinds of privacy issues feed back into how the Colten Foundation and other organizations manage consent. Ethically, voluntary health organizations must consider whether data sharing should always be a two-way street.
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Wolfe advocates pulling in bioethicists as a start to help lay out the issues. MANAGING INTELLECTUAL PROPERTY Although the issues surrounding ethics often converge on agreed principles such as protect privacy, advance the science, and do no harm, different organizations often have diametrically opposed opinions about intellectual property (IP)
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From page 45... ...
In 2004, the university set about doing just that, restructuring to align itself explicitly with the goal of accelerating translational research. Viewing itself as an innovation accelerator, the university worked with academia, industry, government, and voluntary health organizations in order to catalyze innovation.
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From page 46... ...
. BOX 4-2 Key Points: Partnerships, Data Sharing, and Intellectual Property • Coordinated teamwork, whether formal or informal, and organization are critical.
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